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. 

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 

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.   

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.

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 3^rd 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  

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

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.