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Thursday 21 November 2013

Update


Update

Hi guys so I have not updated my blog in a few weeks so I thought instead of choosing a topic to write about I would give you a update on what being happing in my life, with regards to POTS,Af  and how I have been coping.

Uni

So as many of you who will read my blog will know I have decided to carry on with my second year at university. When I made the choice to go back in September it was due to the fact that I really wanted to go back to study  and I really didn’t want my Pots or AF to get in the way of my studies.

Well I don’t think I really estimated how hard uni would be now that I have these conditions. I am actually finding it really difficult ,as many of you know with Pots and AF you have really good days and then you have bad days and at times the bad days can be really bad. There have  been  times when my dizziness has got so bad I have had to leave the class as feel like I might collapse. I have really tried to attend all my classes as I don’t want to fall behind, but I think all the stress is actually making my pots worse as I have to push my really hard which at times can be challenging

I have been lucky that student finance pay for me to get a taxi to uni and back home which has been really helpful and takes the stress out of having to travel on public transport.

I am still going to try and continue to stay at university, but I am going to start to look after myself a bit better and if I need to take a day off I will take that day off without feeling guilty.

Cognitive behaviour therapy

I have now completed a 12 week course on CBT in regards to helping with my anxiety and do not actually think that it has worked for me. One of the reasons me and my therapies discovered it was not maybe going to work is due to the fact that a lot of the internal symptoms of anxiety are actually the same as the symptoms I receive for POTS.

While I didn’t find the course actually worked for me I really did find it useful to talk to someone once a week about the how I was feeling regarding my illness and also just generally how I was coping. As I found this useful my therapies felt I would benefit from a course of counselling which I am actually looking forward to.

Health

With regards to my AF I am actually in hospital at the moment as I am having ablation on my heart tomorrow. I have been going in and out of AF more frequently, so this is hopefully going  to help. I am actually really nervous about having the procedure as I think I am worried it will not work. I have tried many different types of medication for POTS and AF  that I hoped would  work and then they didn’t or my body didn’t tolerate them and this made me lose hope that I would get better. While I am aware that there is a chance that the producer may not work and I may require another ablation at some times on the future, I am praying that it will be successful.

With regards to Pots I have been having some really bad days this month the dizziness has been really been and has been making me feel a little depressed.  I have realised that with pots I can have times when I feel that this illness is going to defeat me and then I have goods days when I feel like this illness is something I can overcome.

I think that I need to give myself more times to come to terms with POTS as I was only diagnosed in May so I need to take time to really get to know this illness as so to speak.

I have decided that my next blog will be on exercise so when I get out of hospital and am better I will be attempting lots of different pots safe exercise and let you all know how they went.

Tuesday 8 October 2013

help with anxiety and depression

hi guys i thought  i would write this blog as I have recently been experiencing high anxiety and depression due to my illness. At times i feel as through i have no one to talk when i am  anxious and this in turn makes me feel extremely depressed. I have recently came across two really good websites that are helping me come to terms with and manage my issues.
The first websites is called https://turn2me.org/ i think this website is fantastic as every week night it offers free group online chats with a therapist  and  9 other people regarding issues such as bereavement, anxiety and depression. You have to book on the group and there are limited places but i find it so refreshing to talk to people who you dont know and will not judge you. There is also the opportunity to have one 2 ones online counseling with a therapies but i have to add that this is not free is is £25.00 for 90 mins.

The second website is called https://moodgym.anu.edu.au/registered/login. This website is like a free online course to help deal with issues such as low confidence and anxiety amongest other. This course reminds me off my CBT class but with out the therapies, i cannot recommend this website enough.

As mentioned in a previous blog i am at the moment taking part in CBT in order to help with my anxiety. Since taking it i have realized how badly being effected with POTS and AF has effected me. I feel at times people dont realize how much it effects you, and how over night your life is changed and  you have to adjust to becoming a new person. I will honestly admit that i have found this really hard and it has made me depressed i am trying really hard to dig my self out of the depression and start a new journey in my life.
I realize in my self that there are issues that i have not dealt with for example my dad dying at such a young age and i believe that this has greatly impacted on my Anxiety  as i am scared i will have the same fate as my dad. My first god child also died of cot death as a baby and i am only now coming to terms  with the fact that she is not here and the pain my best friend goes through every day .  Actually my best friend Zoe give me strength and shows me that things will be better. Since the death of her daughter she has gone to university and made a success of her life, she has given  a beautiful god son who i adore. And while she was doing all these amazing things she was grieving for her daughter. I am so proud of her and i hope that in time i will be able to be like her and make the best out of a bad situation. With time i hope that with the help of these website and talking to people about how i feel i will stop these negative thoughts and try and be the Tamara that my friends love.

i heard this really good quote today that my teacher        put up in the end of my class and i just wanted to share it with you guys
yesterday is History, Tomorrow a Mystery, Today is a Gift, Thats why it's called the Present"

Thursday 3 October 2013

feeling kinda rough

Hi guys I thought I would write this blog to take my mind of the way I am feeling. I have been having a really rough couple of days, yesterday my sister found a new place to move into meaning that I will be home alone. I have not lived on my own since I was diagnosed and it is starting to make me really anxious and worried.
Today I have had a really bad pots day and my friend was like you like fine, I felt like screaming just because I like look fine, I’m not, inside I feel like an emotional wreck. It really annoys me when people say that, just because I look fine does not mean I am ok at times it makes me feel like people think I am lying about feeling ill.
And to top it all off I started getting sharp chest pain on the bus I literally thought I was going to have a heart attack it was so scary, I have had chest pains before but not like that. So I called my doctor and he said he thinks they are called Precordial Catch Syndrome. I literally didn't know what this was so I found a good email site which I will post below and found that they are harmless and do make you feel like you are having a heart attack which is really scary.
I am also feeling really anxious since come of the citalopram and am debating being but back on them. I believe that the anxiety is coming from the fact that I will be living alone and it’s a really scary situation for me.  If anyone has any advice on living alone any tips would great.
I also found a really good you tube video posted by a team of cardiologist about AF and they do discuss other issues. I think you guys would find it helpful

Sorry about my rant I just feel at times I can only express myself through my blog 

Monday 30 September 2013

Help with going to back to university


Help with going to back to university
Hi guys so I thought I would write this blog as I know that there are a lot of you who have emailed me about wanting to go back into education but fee like that your pots well hold you back.
So I decided to that I would go back to university this year. I was concerning taking a year off from uni but when I spoke to my tutor at uni he told me that student finance can help me complete my studies. So I called student finance England and they sent me a disability application form. The form was really easy to fill in, and all I had to do was get a letter from my doctor to statue I had pots. After I sent the application off and it took around 3 weeks for me to get an appointment with a disability adviser which I thought was really good. So the disability specialist was great he knew all about pots and came up with some great things to help me stay at uni.
 He has arranged that I can get a taxi to and from university so I don’t have to travel on my own and I received a computer and printer with different programmes on to help me such as a book reader. I will also get a mentor who will correspond with all my teachers when I am too ill to go into uni, and have the class recorded on a Dictaphone so I do not get behind with my studies. I really believe that with these measures put in place I will be able to successfully l finish uni and all these things are free so I do not have to worry about the cost which is great.
I am fully aware that this year at uni is going to hard but I really want to try and get back to normal and I do not want pots to hold me back any more

I am really sorry about any spelling mistakes I have made usually where I am dyslexic my sister will spell check it for me but she is not here today so I had to try and do it myself. 

Tuesday 24 September 2013

Really bad Withdrawal symptoms

 Hi guys sorry that I have not updated the blog for a few weeks, but I have been really sick. I stupidly decided to take myself off my anti depression and was so sick I had to go into hospital.
To be fair to myself, I have wanted to come off the tablet for a few weeks, so when I got a tooth abscess (and was too ill to take the tablet) I decided that day I wanted to try coming off of them, especially as I’m only taking a 10mg dose. For the first few days I was fine, still a little bit anxious but nothing too serious. Then after day four I started vomiting and having really bad dizziness and stomach aches. After a few days of not getting better, I went into hospital, got put on an IV and anti-sickness medicine and they kept me over night. At the time I didn’t put my sickness down to me coming off the tablet, I thought it was due to me taking a strong dose of antibiotics for the abscess.  
After I was discharged from hospital, I was ok for a few days, then the sickness came back and it was even worse the last time. I phoned my doctor who said I needed to go to A&E ASAP, as this was the second time I had been ill. So I was back in hospital vomiting badly and the doctors phoned a neurologist ,who advised that I once again be kept in overnight and be booked in for an out patients   MRI, and an appointment to meet with him. I stayed in hospital overnight and was pumped with fluid and anti-sickness and in the morning I felt better. I was starting to worry that maybe there was something wrong with my head, so when I got home I started looking online and I accidently stumbled on a post where someone had put that there sickness had been due to withdrawal symptoms, due to coming off citalopram. I then found that there were loads of websites and chat rooms that mentioned the withdrawal symptoms and that it was really common to get them if you suddenly stop the medication. So on one hand I feel better to know it’s not a head problem but I also feel like a complete idiot for (1 stopping the medication suddenly and then (2 not thinking it would affect my body.
I have decided that I do not want to go back on the medication as I want to try and beat my anxiety issues without them. I do not know how successful this will be though. I am doing CBT so hopefully this will help.


So my advice to anyone taking this medication is…. DO NOT think about just stopping the medication, go to the doctor and discuss it with him because trust me; you do not want to spend 4 nights in hospital like me. 

Sunday 15 September 2013

Thankyou eveeryone

I wanted to write a blog to say thank you   to the all the people who are supporting me and inspiring me during my POTS journey My spelling may be a bad as i am still a bit ill. 
I want to start by saying thank you to all the pots groups on face book, all your stories help me not only with this blog but give me  reassurance that I am not alone in this. I feel like we are one big pots family. When I am having a bad day or need advice someone is always there to give me advice and guidance and to be honest I do not know how I would be here without you. To anyone who has pots or has a family member who has pots this group should be your starting point after you doctors to find out information about POTS these guys have been there and got the t shirt when it comes to pots and are always on hand to give advice.
I would also like to say a massive thank you to all the people who take the time to read this blog it is truly a huge honour for me to share my story with you, and I write this blog not just for me but for everyone is who is going through what I am going through. Thank you for all your comments you have given me on the blog, and to all the people who message me on Facebook to say they love my blog and it inspires them.  All of you inspire me to keep writing and all your comments mean the world to me words cannot express how thankful I am.
To my nurses and  my cardiologist and the royal Brompton and Chelsea and Westminster hospital you are all amazing  and it has been a great comfort to me to know I have you as my medical team.
To my little sister who in the last 8 months has been like a mum to me you have looked after me and are here for me 24hours a day. I really don’t think I could have coped with out you and I know I can be really annoying at times but I love you and I am most thankful. This blog would also not exist if it was not for you as you were the one who encouraged me to write this so thank you.
To my friends and my mother in law thank you for caring so much and understand and giving you time to help me and the children. You all go out of your way to support me so thank you

And lastly to my two beautiful children you 2 give me the courage to keep fighting and the faith that I will get better. At times I feel like I am letting you down as you see me collapsing and going into hospital so much that I times I feel like you deserve better. But your hugs and the amount of love you show me makes me feel like I have done a good job with you two, you are both the most amazing children and I could not be prouder to be your mum.
This Pic of you too always make me smile 



Saturday 14 September 2013

my week so far

Hey guys
So today I’m writing about how my week has been so far. So on Monday I had an appointment with my cardiologist and he has booked me in for ablation on my heart in 16 weeks. I am excited and nervous, both at the same time.in a way I am hoping that it relieves the AF , but on the other hand, I’m also worried because I have been made aware that there can be complications with the procedure. I have spoken to my pots friends on the pots Facebook about ablation, and thankfully the majority of those that have had ablation have found it helpful, so I am hopeful that it will help improve my life. I am also lucky that I have an amazing cardiologist and nursing team, whom I completely trust with my life, which does give me some comfort.
The kids also went back to school on Monday Whoop Whoop. I am really pleased with myself that I got through the school holiday as I have been suffering really bad with my pots at the moment,  but with the help of a young careers group, we actually had a really good holiday
Then on Wednesday I started to feel, well basically like crap. I spent two days in hospital which just made me feel even worse to be honest. So for the second time in two weeks I have come down with sickness, blurred vision and headaches. I went to A&E and the doctors were really good, apart from one who, when I was explaining what POTS was looked at me like ‘well you look fine’ and I just felt like I had had enough of people saying that. Yes I may look fine on the outside because I smile but on the inside I am crumbling.
The ‘good’ doctors decided that I needed to go for an MRI (as an outpatient) and have appointments with the neurologist and at the epilepsy clinic. This really scares me. Like REALLY, as my dad died at age 38 of epilepsy and a heart attack, and I just feel as though history might repeat itself.
I just feel like since I have been diagnosed with pots my health is just getting worse and worse. I am trying to be strong for myself but at this time, it is really hard.

On a brighter note, I am out of hospital and back at home with my children .hopefully I will now start to stop feeling sorry for myself.   

Friday 6 September 2013

Oh how i hate anxiety

I thought I would do a blog on anxiety as it is an issue that is affecting me a lot recently, so much so that at times I do not want to go out or don’t feel myself.
I have suffered from anxiety since I was 15. I can remember my first panic attack like it was yesterday; I woke up suddenly in the night and felt like my heart was racing. I felt scared and I remember feeling like I was going to die. For some strange reason I didn’t wake my parents, instead I went outside my house and started pacing up and down my road. To this day I don’t know why I did this, if I had to guess I would say that I thought if I kept moving then I would settle down and I would not die. My neighbour came out of the house and I suppose thought I was on drugs. She came and tried to calm me down and when I told her what had happened she said she thought I was having a panic attack.  She sat with me and told me that she had suffered from panic attacks and that I was not going to die, it was just the bodies’ way of dealing with stress.
I spoke to my mum about this on the day and she told me she suffered from anxiety and so did her twin sister. She suggested that I should go to the doctors and speak to them, I did this and to be honest I didn’t really find them very useful.  I carried on having panic attacks a few times a year but learnt how to cope with them and as I wasn’t experiencing them regularly they didn’t really bother me; but in April that all changed.
I was on the underground to work when I suddenly felt extremely scared and was getting bad palpitations and chest pain. I felt like I just needed to get off the train and when I eventually got off I just ran like I had never had before. I had never felt like this before, to me this was a much different type of panic attack, actually at the time I actually felt like I was having a heart attack. So I got home and my sister and I went to the hospital where they confirmed that I was not having a heart attack but a panic attack.
To me it didn’t feel like it was just a panic it felt much worse, this feeling carried on non-stop. I had been into hospital 10 times in a month and was not getting any better. In June after taking my children to school I came home and just collapsed. I went to a different hospital and that is when the diagnoses process started. This eventually led to me being diagnosed with AF and POTS.
I was beginning to get treated for my Atrial Fibrillation and POTS but I was still having panic attacks and always anxious. I felt like feeling anxious was only making my AF and pots worse so I went to my GP and basically begged for help, I was lucky my doctor understood and refereed me to have cognitive therapy while also prescribing me anti depressives at a low dose, to help with the anxiety. I didn’t really want to go on anti-depressives and I feel that there is a stigma attached to taking them, but after discussing it with my doctor I felt I should give it a try.
So two months on and I still feel anxious a lot of the time. I really do believe that being anxious makes my POTS much worse as I feel trapped and am scared to go out, always worrying that I will collapse or feel too dizzy to walk, or even not be able to socialise with my friends because of the anxiety. Another aspect of my anxiety is that I always feel like something bad is going to happen to me or that I am going to die and this is what generally will set me in to a panic. Since I have been doing cognitive therapy though I have learnt that it is my own negative thoughts that cause me to panic, and that the more you feel negative, the more you panic. For example, I don’t want to go out because I feel that I will collapse, this will then cause me to get even more anxious and then my heart rate will go up even more, making me panic more; the cycle is complete and never ends.


Although I do know that really it’s just my negative thoughts that are stopping me. I need to realise that yes I have POTS and AF and they have changed my life and yes I have really bad POTS days and if I go out there is a chance I could collapse, but if I don’t try then I will never know how strong I am. I am actually laughing while I write this as while I can write what I should be doing, doing it is another story altogether
It is really hard to not think negatively but I don’t want to be like this anymore I want to attempt to be able to watch TV without think of bad things. I am only two weeks into my cognitive therapy and I am determined to give it my all, I want to beat this as yes I have POTS and AF and I probably  always will, but I will not feel anxious any more.
I would really like to know about anyone else who suffers badly from anxiety and how you deal with it.
Also I will keep you guys up dated and do a blog on how my cognitive therapy is going and from now on it is all about positive thoughts.


Thursday 29 August 2013

Bad experience with alcohol


I thought I would write this as a blog page not only to share my experience with you, but to also to remind myself that next time I want to have a few too many wines, then to think of the consequences.
Before I was diagnosed with pots I will openly admit that I liked to have a few glasses of wine a week. But since I have been diagnosed with pots I have not really drunk at all, except for the odd half a glass of wine.
So on Thursday I went to do my shopping and noticed that my favorite wine was on special offer which is a very rare thing, actually since I have had pots all my favorite wines have had special offer deals which have slowly been tempting me to purchase them. So I decided that I would buy the wine and I could keep it the fridge for when I had friends over.
As I sat down in the evening I remembered that I had the wine in the fridge so I thought I would have a small glass and that would be it. But that one glass turned me greedy and that glass turned into 3 glasses, I know I am very greedy.
After I finished the 3rd glass I realised what I had done and tried to drink as much water as possible to try and re hydrate myself.
This did not work the next day when I woke up I felt horrible and not the normal hangover horrible. I was really dehydrated and felt really sick and dizzy I’m telling you guys it was completely like no hang over I had ever felt before.
I’m not going to say that I will never have a drink again but what I will say is that I will stop at one or two .and drink a lot of water in between.


Has anyone else had any good or bad situations with alcohol if you let me know  

Tuesday 13 August 2013

Awareness for Postural Orthostatic Tachycardia Syndrome petition

Hi guys one my pots friends on face book has started a petition online to make the government be more aware of pots and  for doctors to be given more funding to do  more  research on pots . 

I feel this is a great idea and agree that there is not enough awareness about pots. Once when i went into hospital i had to actually explain what pots is to a doctor , which is a joke!!! The person who started the petition has been into A&E over 250 times which is unacceptable.

So please sign the petition so we can help bring more awareness about pots. 

here is the link to sign online
http://epetitions.direct.gov.uk/petitions/53773

Monday 12 August 2013

Medication to help pots symptoms

Pots Medication

In my one of my pots blogs, I said that I had tried a variety of different medications to help control my pots symptoms. As the last one I was on didn’t have any success, I decided to do some research on different types of medication that are available to POTS suffers. One of the most important things I have learnt while researching the different types of pots medication is that; there is not actually any medication that has 100% been approved for POTS. Doctors have found that medication that is used to help with the effects of different illness can actually help relieve some of the symptoms that we POTS sufferers get. These drugs can be a huge relief to some pots suffers, and help them live a normal life. I have not mentioned all the drugs that can be used to help pots suffers, but have picked the main ones that are mentioned on the pots Facebook, as they seem to be the most used ones. While I have done research on all the drugs, talk to your doctor if you are interested in taking any of them as they will know the full benefits and side effects, as well as if this drug will benefit you

Ivabradine
I have started with this medication as it was the first drug that I was given to help relieve some of my pots symptoms, it is a popular drug with many UK pots suffers and has helped many people.
Ivabradine’s main use is to help prevent heart angina and to treat heart disease. It can be used to help Pots suffers as it slows down the heart by just a few beats per minute. When the heart is racing Ivabradine can help bring the heart down just a little bit which can help the efficiency of the heart pumping blood around the body. This can help relieve dizziness or the light headed feeling that many pots sufferers’ gets. Ivabradine is also a good alternative for people who cannot tolerate beta blockers.
As with any medication there can be side effects with this drug and they can range from headaches. Which people can get in the first month, to dizziness and blurred vision, among others.

I was prescribed 2.5 mg of Ivabradine and found that It really helped with my chest pain and did make me feel a little less bit dizzy but  after 2 weeks of taking it I was told to stop for the mean time as it was lowering my heart rate,  which for me has been a problem with many drugs. I do think that this is a good drug and I hope that in the future I will be able to use it again

Midodrine
This drug is used to treat people who suffer from low blood pressure, which many Pots suffers do. This drug helps by stimulating the body’s nerve endings blood vessels, causing the blood vessels to tighten, which in effect increases blood pressure. This allows more blood to flow to your heart and brain and, will help relieve symptoms caused from low blood pressure, such as dizziness and fainting.
Midodrine has previously been removed from the drug market. This is due to Shire plc, the company who manufactures Midodrine, failure to complete certain clinical studies; however it has been reinstated in the market due to the drugs benefits.

The most common side effects of this drug can be headaches, heart beat awareness, chills and Goosebumps, amongst other symptoms.

I have never tried this drug so I asked some of the pots sufferers on the Facebook page how they found this drug. most of them were really happy with the drug and found it gave them a better quality of life however some said that they had to be taken off the drug due to not ‘taking’ to the drug. I would actually like to try this drug as it seems it can be useful and help control some pots symptoms.

Beta Blockers

Beta blockers are used to treat a number of different heart problems such as preventing angina, lowering blood pressure and helping to control abnormal heart rates and rhythm. There are many different types of beta blockers such as atenolol, bisoprolo, and toprol. The medicine works by blocking the transmission between certain nerve ending and these stops the receptors from being stimulated, this then helps slow the rate the heart beat down when it is racing. Some of the side effects of this drug is that it can make the heart rate turn bradycardia (which means it goes rather slow) which in effect can lead you  to feeling more dizzy and faint.
I have tried Beta blockers, when I first went hospital, and only lasted on them a few hours; I was taken off as they lowered my heart rate into the 30s. I don’t feel like I will try this medication again as I had a bad experience while I was on it. But other pots patients have said that to them beta blockers are really useful. I would advise that if anyone does want to give them a try then you ask your doctor to put you on a low dose and see how this goes.

Florinef (Fludrocritstion)

Florinef can be useful to patients who have a low glucocorticoids, which are an important part of the body as they help salt and water balance which helps keeps a person’s blood pressure stable. It can help pots suffers as well as most of us suffer from low blood pressure. Florinef helps the kidneys to retain more salt which helps your kidneys converse water. This can help pots suffers feel less light headed and dizzy, which I can imagine would come as a massive relief, and help improve any pots suffers life.
The side effects of this drug are swollen feet and ankles, abdominal pain and difficulty sleeping. It is also important to talk to your doctor before taking this drug if you suffer from high blood pressure.
The dosage for this medication is between 1mg and 3mg a day, a lot of the pots Facebook members said that they found this tablet helped them best if they took it first thing in the afternoon and it could take up 6 months to see any improvement in their symptoms.
I personally would consider trying this drug as if it can even help with my dizziness a little bit it will massively improve my life.

IV SALINE THERAPHY

Out of all the drugs that are used to help pots sufferers this seems to be the one that is the most talked about and desired on the pots Facebook. People have said that when they have gone into hospital and had this it makes them feel normal for a few hours or days. There are some patients who suffer from pots so badly that they will have the IV at home, usually thought a chest port and that this has dramatically changed and helped to improve their lives. Because we have to drink a lot of water and take a lot salt just to be able to function, if you have an IV saline it is like an instant hit of salt and water and as it goes straight into the vein it works almost immediately.
The only down side is it really hard to get your doctors to consent to having a home port IV saline as there is risk of infection. I like many other ‘poties’ would love to have this at home and would take the risk of an infection, just to feel normal again but it is very unlikely I will ever get one so guess I will just have to stick to guzzling water and eating salt all day, I know my life is so fun lol.

SSRI DRUGS

These drugs can be used to help pots patients who are suffering with depression or anxiety. I am actually taking Citalopram, 10 mg a day, for anxiety.  These tablets are actually helping me be less anxious as there was a time just before I was diagnosed with pots I was really dizzy and was regularly fainting and this made me not want to go out. I felt like I was just going to faint and be unable to have a normal conversation with anyone due to me feeling dizzy. I was actually told that all were symptoms were due to me being anxious and depressed when I was put on these tablets and diazepam  by my GP, so when I knew something was not wrong I thought I was going crazy which made me more anxious. When I finally went to a good hospital after fainting and injuring myself I was eventually diagnosed with pots, which did help me feel a bit better but I do not yet feel ready to stop taking the anxiety meds as I feel I still get scared at times of my new life.  I found that a lot of pots sufferers suffer from anxiety and take different SSRI tablets and they do find them useful as well. I am going to be starting cognitive therapy in the next few weeks so I am hoping this will help me and then I will slowly be taken off these tablets.
The side effects I first got from taking these tablets were headaches and feeling a bit nausea but you can also feel really tired and gain weight as side effects as these tablets.


Non medication treatments

Water intake and salt intake
Since I have been diagnosed with pots I have had to increase my water intake to about 2 litres a day and majorly increase my salt intake. To be honest I have found it annoying to constantly be drinking water all day but I do feel that it really helps. The first thing I do in the morning is have a big glass of water and it just makes me feel like a can function. With regards to the salt I have noticed that if I have not eaten any salt in the day then I feel much more dizzy than usual, so for me it really is important that no matter how much I don’t like drinking so much water it really is a necessity if you have pots.

Cognitive Therapy

Now having therapy is not going to cure you and won’t help make a dramatic change in your symptoms but I think that just taking to someone about how your feeling can help. I am starting this therapy next week so I will do a blog on how I found it and if it helped. 

Friday 26 July 2013

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.

Wednesday 24 July 2013

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. 

Tuesday 23 July 2013

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