The Next Steps After a POTS / Dysautonomia Diagnosis

When I was first diagnosed with dysautonomia I had no idea I had an autonomic system, let alone what it actually did. I wonder whether this is true for a lot of people. After all, our autonomic systems do what the body needs ‘automatically’ – so we don’t give much thought to how our hearts beat or what our blood pressure is up to. Until, that is, this system starts to act up and we start to experience life-limiting symptoms.

Thankfully, I saw the right specialist to manage my dysautonomia, and feel more confident in managing my symptoms with medication, and diet and lifestyle changes.

This post is meant for those new to a diagnosis of POTS/ dysautonomia or in the process of being diagnosed. I hope that it will act as a guide for questions or discussions to have with your doctor, so that you can seek their advice on the most comprehensive way to manage your dysautonomia.

This post is for informational purposes only, and does not constitute medical advice in any way.

Jump to:

• Make sure that you are seeing a specialist in POTS / dysautonomia
• Have the right tests
• Persevere with medications
• Get salty!
• Drink like a fish!
• Ask for a physio referral
• Ask for a dietician referral
• Check out the POTS UK website
• Join support groups or Instagram communities
• Ask to be assessed for associated conditions
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Make sure that you are seeing a specialist in POTS / dysautonomia

This may sound obvious, but the first step after a POTS or dysautonomia diagnosis is to ensure that you are seeing a doctor who specialises in diagnosing and treating these conditions. Hopefully, you already are and that is why you came to be reading this post!

Rather worrying though, I have heard stories of GPs (general practitioners) diagnosing a patient after a quick ten minute chat, not referring the patient on for any tests and then handing out medication. While it is great that doctors are becoming more aware of dysautonomia, it is vital that you have the correct tests and see a specialist for appropriate medication and advice on lifestyle measures.

Finding a specialist isn’t the easiest, but Dysautonomia International has a comprehensive list of doctors.

If you are in the UK have a look at the list of doctors recommended by POTS UK.

Have the right tests

Again, hopefully you will already have seen a specialist and had the correct diagnostic tests if you are reading this post. These tests are typically a tilt test and/ or active stand test.

Many patients, myself included, are also referred for scans of the heart to rule out any other issues and have a 24 hour holter (or, as I have had a few times, week-long) which monitors heart-rate and activity (see the diagnosis of POTS page by POTS UK). Some years later after some new symptoms I also had a cardiac MRI which looked at blood flow through the heart, but I don't believe this is a standard test to begin with.

So be prepared to have quite a few tests if a doctor suspects dysautonomia! They will need to run tests to see if you meet the diagnostic criteria for POTS, if investigating that particular form of dysautonomia, as well as ruling out any other issues.

Persevere with medications

Medication is definitely not a one-size-fits-all situation. We all react differently, and may have to trial several (or many) medications to find what works best for us. For POTS, the POTS UK page on medication has a comprehensive list of typical medications for this condition.

Personally, I took midodrine for about a year and it did help, although I found the side-effects quite difficult. I had to stop as it contra-indicated with another medication for a different condition. Through my social media I have spoken with many people who love this medication and find it super helpful. I now take ivabradine, and fludocortisone is being discussed as a future treatment. I also take slow sodium (basically salt) tablets everyday.

It's also the case that symptoms can worsen for some during the so-called October slide, so it's always worthwhile taking to your doctor at this time to help alleviate a flare-up.

Get salty!

Many POTS / dysautonomia patients are advised to increase their salt intake in order to help boost blood pressure (the exception being hyperadrenergic POTS*). I found it really strange to add salt to my meals at first. After all, lots of health advice is to do the opposite – to decrease our intake. I often get shocked looks when I carefully sprinkle add a ton of salt to my food!

Personally, I find regular table salt really hard to stomach. It is so strong to taste, and a lot can make me feel nauseous. My doctor recommends trying pink Himalayan salt instead, and I find it much milder to taste. It’s also got lots of minerals so that’s a little benefit too!

Other ideas for salt-heavy foods:

Vegetable stock / broth; feta cheese; olives; anchovies; salted nuts; crisps; soy sauce

Drink like a fish!

As well as increasing salt, many patients are advised to up their water / fluid intake to around 2-3 litres a day. I can easily get to 2 litres, but any more is quite tough for me and my nurse is always telling me off for this! I rarely get to the elusive 3 litres she would like, other than when it is really hot at the height of summer. Must.keep.trying . . .

A few things have helped me reach my water intake goal though. The first is tracking my fluid intake through my Fitbit app on my phone, and the second is using a water bottle that has the measurement of fluid along the side of the bottle. These really help me keep on track!

I also always have a filled water bottle with me when out and about. This Joseph Joseph one is my favourite for shorter trips out (and has a handy tracker on it), but if I know I will be out for a longer time then the larger Black and Blum is my go-to (neither have leaked on me and I've had them for years).

Increased fluid intake isn't recommended for some forms of POTS - check with your doctor!

Ask for a physio referral

Exercise and dysautonomia feel like a vicious cycle of issues in my experience. My symptoms made exercise really tough, almost impossible at my worst, but de-conditioning can worsen symptoms. There are studies that show that a programme called the Levine Protocol has substantial benefits for some patients, and that light to moderate exercise is beneficial, even curative in some cases of POTS.

But how to start if you haven't been able to exercise for a long time? I don't have the answer to this, but a physiotherapist who specialises in managing POTS or dysautonomia may be very helpful. Personally, I saw a physio for a couple of sessions and it was invaluable for getting back to exercise in a controlled and safe way, that didn't over-tax me to feeling worse but pushed me a little to exercise more.

We started by looking at my activity levels and it was all over the place. One day I was sat on the couch doing zero exercise, the next day, if my symptoms allowed, I was forcing myself on a long walk. So we agreed that I would do ten minutes of 'cycling' on exercise pedals at home. These are great. It's like a bike, but just the pedals so you sit on a chair and pedal - while watching TV if you are me!

Once I had mastered exercising while sitting down, we moved on to walking and adding in a bit of resistance work with light dumbbells. Over the years I have progressed to being able to run, which I didn't ever think would be possible. It has helped my physical health but also my mental health as I feel much stronger and confident being able to exercise on my good days.

Seek medical advice before starting an exercise programme or changing your programme.

Ask for a dietician referral

If you are struggling to get your salt in then a referral to a dietician may be really helpful. They can help you choose more salty foods that are appropriate for you - have a look at the list above for a few ideas!

With POTS and dysautonomia it is also usually recommended that you avoid large meals, and many people benefit from avoiding refined carbohydrates and caffeine. I definitely can't drink regular coffee - it's an occasional decaf coffee for me unless I want my heart thumping way too fast in my chest! A dietician can help you meal plan and get the right kinds of foods to help you rather than exacerbate symptoms.

Check out the POTS UK website

The POTS UK website is my absolute go-to resource for POTS / dysautonomia. It is packed with helpful information and resources and I return to it over and over to check things to this day. POTS UK also has an Instagram account that you may like to follow.

Join support groups or Instagram communities

Having a condition that is under-recognised both by doctors and people in general can feel isolating, confusing and anxiety-inducing. One of the best things I did was to connect with others via social media.

I honestly wish I had created my Instagram account sooner! It is so helpful to be able to talk about your condition with people who 'get it' and who can offer advice on doctors, helpful products and so much more. Or just to have a bit of a vent to now and again on a bad day! The sense of community is so lovely and everyone is so supportive of each other. If you would like to join my health journey, my social media links are on the right!

Ask to be assessed for associated conditions

While it is entirely possible to have dysautonomia without other conditions, it is the case that there are certain medical conditions associated with POTS / dysautonomia. These are hypermobility Ehlers-Danlos syndrome and mast cell activation syndrome. I live with both these conditions, but had no idea I had them until my cardiologist suggested I be assessed.

If you suspect that you may have either of these conditions I would recommend asking for a referral to a doctor that specialises in the condition. I have had way too many doctors tell me that hypermobility is 'just being a bit bendy' when it is far more than that, and MCAS is very under-recognised in the medical community.

I've had the 'you have what?' question asked many times when I say have the condition. So best to see someone who really knows what they are doing when it comes to assessing your health for these conditions.

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* Conner, R. et al. (2012) 'Postural Orthostatic Tachycardia Syndrome (POTS): Evaluation and Management', British Journal of Medical Practitioners, 5(4): 540. Article can be found here

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Please follow the advice of your doctor as to all medical treatments, supplements, and dietary choices, as set out in my disclaimer. I am not a medical professional, and this post, as well as all other posts on this blog, are for informational purposes only.