I hope you are all having a good day :)
October is PoTS awareness month and is one of (the many) chronic conditions I have. So... I thought it only right to help raise awareness about what the condition is and help make those who have the condition feel a little less alone.... because it can feel lonely at times! I have made a matching video for this so if you are more of a watcher than reader there is that option too :) What is PoTS?
PoTS stands for 'Postural Orthostatic Tachycardia Syndrome'.... quite the mouthful right?
Normally when you do things like sit up or stand up gravity pulls some of your blood to places like your feet, hands and belly. This then causes the blood vessels to quickly narrow and your heart rate increases slightly to maintain blood flow to your heart and brain so that your blood pressure doesn't drop which is always helpful! All of this is done by what is called your 'Autonomic Nervous System' without even having to think.
In PoTS, your autonomic nervous system basically....doesn't work properly. You end up having a drop in your blood supply to your heart and brain when you become upright and your heart then races to compensate. Basically your body just doesn't like to be upright!
BUT..... as with any chronic illness or any illness for that matter, all this comes with some not so nice symptoms which I won't lie .... SUCKS!
Symptoms can include;
- Dizziness - Headaches
- Lightheadedness - Insomnia
- Fainting - Chest Pain
- High Blood Pressure - Nausea
- Heart Palpitations - Shortness of breath
- Shaking - Brain Fog
- Sweating - Skin Discolouration
- Fatigue/ Weakness - Anxiety
Obviously as with any illness everyone gets different symptoms to different degrees. And everyday is different!
There are a few things that have been said and I personally can vouch for that aggravate symptoms making them worse. Things such as heat, eating, exercise and being on your period (seriously... boys have no idea how lucky they are to not have periods).
{I also included some of other peoples symptoms and triggers on my video so it wasn't just from my point of view so click HERE to go watch that}We have also learnt that many symptoms you get with PoTS overlap with conditions like EDS and well..... many others. So just because you have these symptoms doesn't definitely mean you have PoTS.
How is it diagnosed?
There are a few different ways to diagnose PoTS. One thing I will say is that PoTS can often be mis-diagnosed as anxiety and panic attacks and that is if you find a doctor that even believes you to start with.
PoTS is diagnosed if your heart rate increases by around 30 beats per minute after standing or if it increases to more than 120bpm... or there abouts anyway.
You may have one or more tests to help diagnose the condition and they could be ones such as:
- The Tilt Table Test: (This one is probably the worst one) It is where your heart rates and blood pressure are measured while laying on a bed, and then the bed is titled into a more upright position while more measurements are taken.
- The Active Stand Test: This is where your heart rate and blood pressure are measured after lying down, immediately upon standing and after 2, 5 and 10 minutes.
- An Electrocardiogram (ECG): This is a test of your heart's electrical activity.
- An Echocardiogram: This is an ultrasound scan of your heart.
- A 24 Hour Blood Pressure & Heart Rate Monitoring: Small devices are attached to your belt to then be able to take regular readings of your blood pressure and heart rate whilst you're doing you're normal activities.
- Blood Tests: These are to test your kidney, liver and thyroid function as well as measure your blood count, calcium and glucose levels.
Reducing/Controlling your symptoms:
Whilst everyday is going to be different to the last and what works one day totally doesn't the following day, there are a few things that can help reduce and control some of your symptoms.
The one I personally find the most effective is drinking plenty of fluids and making sure I stay hydrated. We are all guilty of just forgetting to drink throughout the day but it really does make a difference.
Another one I find really effective is keeping active. I don't mean do exercise until you pass out... you need to pick what works best for you and it is a little bit of trial and error. It can be things like a walk, pilates, swimming or doing something more strenuous if you're able to. Keeping active helps maintain better circulation which in turn helps keep a better blood pressure and heart rate. It also helps mentally! Double whammy :)
I haven't personally tried this one yet but wearing tight compression socks (kinda like what you're given on a plane) as these help improve your blood flow in your legs meaning your legs share some of that blood with your brain or heart... yay!
Super tricky in life sometimes but where possible avoid standing for long periods of time and when you come up from lying down or sitting down.... do it slowly!!!! Trust me.... it really doesn't feel very good if you do it too fast.
In terms of foods and drinks, avoid driving lots of alcohol or caffeine and include more salt in your diet (unless you have high blood pressure or heart disease.... then have less salt!).
There aren't however any medications licensed for treating PoTS however your specialist might suggest trying a "off label" medication like Midodrine or a Beta Blocker/Ivabradine. This means it hasn't undergone clinical trials but is believed to be effective.
What causes PoTS?
In many cases the cause of the problem is unknown.... typical right?
In other cases there are some known causes and things that are very closely linked hand in hand. Some of the known causes are:
- Joint hypermobility syndrome / EDS : this is a condition where the "glue" that holds your body together basically doesn't do its job. It results in unusually flexible joints and abnormally elastic blood vessels. - I have done a full blog post on this condition so click HERE if you would like to head over there to learn about that. I've also made a video on that over on my youtube channel!!
- Underlying Conditions such as diabetes, lupus, cancer, chronic fatigue syndrome (CFS) and a few others.
- Poisoning with alcohol or certain metals
- Viral Infections - the good old one doctors like to say and sadly is true is that viruses can unfortunately sometimes cause nasty after affects and problems
- Inheriting a faulty gene that causes too much of the "fight or flight" hormone noradrenaline to be produced
I am not a trained doctor (though I actually feel like I would really enjoy it) so if you think you might have PoTS or something similar please go to a specialist and ask for advice.
Having any chronic illness can have a massive impact on your mental health along with a ton of other things. It can feel super lonely at times or even make you feel like a crazy person. Please remember you are not alone and most certainly NOT crazy!!! I completely understand how you feel as does millions of others in one way or another. You are stronger than you think and you most certainly can beat your body and still achieve things you want to. Remember... losing is not an option!! :) We are in it together and if we stick together, spread love and awareness and help one another.... we can and will achieve absolutely ANYTHING!
I really hope this helps you understand a little bit more about what the condition is and all the things that go with it. Remember, it might take a few seconds to share a post about it but people with the condition experience these symptoms every single day all day and night.... we need more research to be done to find ways to manage this condition. So ... please please please share this post and help spread awareness about PoTS..... Just because it is an invisible illness and you can't physically see it does NOT mean it is not there or not real!!
That is everything for this post so all that is left to say is have a lovely day and remember to smile :)
Stay Strong
<3
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