I got diagnosed with Postural Tachycardia Syndrome (POTs) in January 2015. I must admit, with everything else going on I was a little surprised when they informed me about this too. I have problems with my tummy and bladder which had taken centre stage, so I had to learn how to adapt my daily life with this condition too. PoTS is the abnormality of the functioning of the autonomic nervous system and can be a life altering and debilitating chronic health condition. Simply standing up can be a challenge as the body is unable to adjust. Symptoms include headaches, fatigue, palpitations, sweating, nausea, shaking or tremulousness, shortness of breathe, visual problems, fainting and dizziness. These are associated with an increase in heart rate from the lying to upright position of greater than 30 beats per minute, or a heart rate of greater than 120 beats per minute within 10 minutes of standing. For me, I experience severe head rushes, palpitations, shaking and collapsing so standing up quickly is definitely a no no for me. Straight away I was put on medication called Fludrocortisone which is steroid. Unfortunately it hasn't been successful yet. I'm just about to be started on a new medication called Midodrine to see if that helps (fingers crossed!). There are also non-pharmacological methods too. Firstly, for a lot of people symptoms tend to be worse in the morning, this is because their body has been laying down for a long period of time and adjusting to the upright position takes longer. Many suggest getting up slowly in the morning. For me, on a normal day I would firstly sit up in bed for an average 5-10 minutes (if I'm not in a rush) and then I would sit on the edge of my bed for a bit and then slowly stand. Before I used to just sit there singing to myself and let my body adjust but recently I saw my specialist and she told me to pump my legs up and down or squeeze my calf muscles, so this would help push the blood faster around my body to my brain. However I must admit I haven't found these beneficial yet but it's still early days! Next, rapidly moving from laying or sitting to standing position is dangerous again this is due to the body not adjusting to the movement quick enough. Depending on the time of the day, I have times when I can stand quite normally or times when I have to take it slowly and not bounce up an excited kid! Also, dehydration is a massive factor, because fluid will increase circulatory volume and blood pressure. You are advised to drink between 2-3 litres of fluid per day, which is a huge amount but we are made up of 60% water which makes it extremely important, for any person! I must admit I'm not the worlds best at this, I do struggle to reach this target but when I can I try and pour as much down my throat as possible! Salt is also another suggestion specialists suggest, because this helps boosts your blood pressure, they recommend you to have between 3-10g per day. Heat causes blood vessels to widen thereby increasing heart rate and symptoms. Most people find symptoms are worse during the summer. I know a few tricks of the trade to help. Firstly, further increase salt and fluid intake if you feel hot or start to sweat more. Have a spray bottle of water at hand for your face and neck. Also a fan can be helpful, especially on those warm evenings, and we all know how that feels! Also avoid taking prolonged showers or baths, as this dilates your blood vessels, thereby increasing symptoms. For me this is a big problem and I've had a couple of scary moments where I have collapsed which is definitely something I don't want to happen again if i can help it. I've been told that taking in a glass of cold water in with you and sipping on it in-between can help or purchasing a shower seat so that you can sit down and not be at high risk of collapsing. Lastly, fainting is scary symptom but it can be avoided by learning to take notice of early warning signs such as light-headedness, dizziness, nausea and making sure your doing something about it. Obviously laying down immediately will make sure you down inviolately fall down. If your circumstances make this difficult I've been taught to cross your legs while standing or rock up and down on your toes, or clench buttocks (yes, really) and abdominal muscles or clench your fists. The one that works for me is crossing my legs and you won't look too odd when doing this so no one realises, result! Furthermore, the risk of fainting can also be minimised by coming up from laying to standing slowly or sitting for a while first. Avoid prolonged standing, or sitting so fidgeting is the key! Avoid having your hands over your head for a prolonged time as the heart needs to work harder thereby increasing tachycardia. There are others which I have mentioned previous, such as time of the day, dehydration and physical exertion. Everyone with PoTS is different and you definitely have to adapt to the condition. You must learn to try and be in control of it, however you do have good and bad days and unfortunartly you can't pridicte when they are! I've met some lovely people who have this condition and they really have helped me with coming to terms with this. Like I said at the beginning, I didn't see this condition coming and I'm still trying to keep it under control. However I think I am slowly getting to grips with it because at the start, it really does try and catch you out! But like everything you must keep going and never let anything beat you!
This is just a brief outline of PoTS, but if you know someone who has this condition and you want to know more or you yourself, have this condition then there are two great websites to have a look at. When I was in hospital, and I was informed I had this condition a lovely lady in the opposite bed from me, who's now a friend, who also has been condition walked over to me and gave me a piece of paper with the names of these two websites on it, so that I could come to terms with it. That is something I'll never forget because it meant a lot and it really helped me in that situation. So now, I want to pass it on too, so please have a read.
POTS UK - www.potsuk.org
STARS - www.stars.org.uk
One last thing... if you want me contact me regarding anything about PoTS i'f love to hear from you.
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