POTS advice, fast HR on standing

[Glove20]

I think I may have pots which has developed or worsened perhaps since having baby several months ago.
I also have been diagnosed with hashimoto thyroiditis but this is treated.
I keep getting particularly lightheaded and head rush after bending down - when I straighten up again. Similar if lying down and stand up. My HR seems to be ok when resting but seems to fluctuate alot when I get up etc.
I have times when I feel breathless, I'm very fatigued and my anxiety is alot worse generally, partly not helped by a difficult year.
I've tested my HR when lying down - it's around 70 then I stand up and it's 120 or more sometimes. It stays like this for a minute or so, sometimes longer maybe.
Even bending down like crouching to do something I checked it and it's 70 goes up to 115 or so on standing.
Some days I feel worse than others.
GP not very helpful and just dismissed it. I'm going to ring them back. Also I checked by bp and it's normal with no drop on standing. If anything it goes up a bit on standing.
Couple of occasions I've felt really off generally and had nausea/ loose bowels which instantly made me feel terrible. Drinking water helped.

Has anyone got this, if so what was your HR like? How was it diagnosed. I'm tempted to go private . But then some days I think is it all in my head/ anxiety. But then i think there must be more to it.

Hi Glove20- I’m new to mumsnet but I came across this as I’ve been doing a lot of research on POTs. I seem to have developed POTs post pregnancy too which has changed my life. It started in November 2020, I was pretty much bed bound for 2 months and still have some really rough days. I haven’t been officially diagnosed but I saw a private cardiologist and he thinks it’s POTs and advised me to increase my salt and fluid intake which I think has helped me. I also got prescribed ivabradine but I’m reluctant to start it. GP not helpful at all! Although I’m not anaemic I look very pale and my hands/feet look pale and cold most of the time. It’s actually scary to see how much it affects quality of life. I now feel nervous being left alone with the kids as I can feel really rough at times. The hardest thing for me right now is the blurred vision I seem to constantly have 😔.

Is it worth having the tilt test? I have days where my heart rate will go from 70 to 120/130 (it was worse when I first felt ill) but then there’s days where the jump in HR isn’t as much ~110.

I hope you start to feel better soon and I think it’s worth seeing Dr whether NHS or private as it’s worth getting answers. I’m just not sure I would qualify for a tilt test on days where my HR isn’t going up as much.

@Perry13. This is an old thread, but I have PoTS (hence the user name). I was diagnosed at age 46, traced back to when I was age 7 as, in my case it’s secondary to Ehlers Danlos Syndrome. My teenage son also has both PoTS and EDS.

New guidelines say a TTT is not necessary for diagnosis. A positive active stand test is sufficient and to be honest, TTTs are a horrible experience, so best avoided if you already have a diagnosis, unless absolutely necessary. For a diagnosis they need to see a sustained. 30+ beat rise in heart rate on standing, usually with no concurrent drop in BP, but some people can have Orthostatic Hypotension and/or Vasovagal Syncope in addition to PoTS.

Why are you reluctant to try the Ivabradine? It’s a game changer for a lot of people. It doesn’t drastically reduce the hr increase, but for some reason it blunts the constant over-reaction of adrenaline, so you are less exhausted, with fewer symptoms. I have been on it for five years now and my 17 year old son has been on that - alongside midodrine - for two years. As well as the meds, salt and fluid, the Cardiologist should have advised you to try medical grade compression stockings, which your GP can arrange to get you fitted for. Waist high is preferable, if not full-leg/thigh highs are the next best thing, although my son wears knee highs, as he can’t tolerate them any longer. Also, if you are drinking more fluid, adding in a couple of electrolyte drinks a day might also help with symptoms, we use the Nuun dissolvable tablets, which you can buy from sports shops and/or Amazon. They don’t have synthetic sweeteners in like a lot of other brands, which is preferable.

You will get fluctuations in severity, so that will mean some days the increase may not be as bad and others it might be quite dramatic. Dehydration, any sort of illness/virus, poor sleep, getting stressed or overtired can all contribute to making it worse and sometimes we just get ‘crashes’ for no apparent reason that can last a few days, a few weeks or even months. Anything that affects your autonomic nervous system or pushes your adrenaline up can trigger a flare up.

The quality of life of a PoTS patient is described as being similar to that of someone with COPD. The extreme levels of exhaustion and autonomic led adrenaline surges really take it out of you and rest doesn’t really help. Learning to pace effectively is the key to getting a handle on managing things better. Despite the exhaustion, you need to maintain muscle mass to help your body push blood back to where it’s needed when you stand. Starting with reclined/floor based exercises or a reclining exercise bike or rower, just for a couple of minutes a day to begin with is the best way forward.

Lots of information on the PoTS UK website and have a watch of some of the York Cardiology/Dr Gupta videos on YouTube as well, as they’re really reassuring. The ones about sleep are particularly interesting.

@PermanentlyDizzy thank you for the detailed reply!

To be honest I've not had any tests specific to POTs not even an active stand test, but I've done it myself and I can see the increase, sometimes more dramatic than other days. The consultant I saw seemed familiar with POTs and after doing ambulatory ECG and blood pressure monitor as well as echocardiogram to rule out any structural heart issues (all came back clear) so assume it's POTs.

It sounds silly but I'm worried my HR will drop more than it needs to when I'm resting, like I said sometimes the HR increase isn't as drastic. It says to stop taking it if HR goes below 50.

There was no mention of stocking but have read that it's recommended, so thank you I will look into that as I think I need something to help me with the leg/calf pain. With regards to the exercising, is it safe to do aerobic type because I get quite out of breath and heart racing which puts me off but I need to build muscle mass. I went from weight training to barely able to stand my legs 😔.

I recently ordered the Nuun tablets so I will
be having some of those soon hoping it help boost my energy level.

Is there anything that can help with blurred vision? I had a really rough day yesterday, couldn't sleep at all and my heart/chest felt unsettled. Hoping for better night tonight.

Thanks @PermanentlyDizzy, appreciate all your advise and recommendations.

@Perry13 My baseline resting HR was 65 when I started Ivabradine. I’m now on the highest dose, having had to gradually titrate up over the years.

If your HR was below 50 during the daytime, then yes, you would need to reconsider dose and/or try a different medication, but that would be very unusual and I haven’t heard of anyone it’s happened to. On Ivabradine, most people’s resting rate drops by about 10 beats and their HR increase is just blunted, again, often by around 10 beats-ish. Now my usual resting rate during the day is low/mid 50’s and at night it will sometimes drop to 48. My cardiologist is happy with this and says even perfectly healthy, fit people’s HR can drop into the high 40’s when they are deeply asleep, especially if they already have a low resting rate.

Aerobic exercise is not the best to be honest, it’s not that it’s not safe, it just pushes your HR up even higher than your usual standing rate, which will make you feel awful. Also, lots of people with PoTS have disordered breathing, that gets worse with exertion. So reclining/floor based and strength training is the best option, with reclining bikes or rowers also being useful. You need to build muscle, rather than actually ‘get fit’ if that makes sense. Here is the CHOP exercise guidance from Dysautonomia International which explains it much better than me.

Blurred vision is an issue for both me and my son. Unfortunately pupillary control is autonomic. We’re also light-sensitive, as a result of the pupil not reacting as it should or not as quickly as it should. I find it’s worse when I am exhausted or ill and better on good days. If you are pushing yourself too hard, your symptom will be worse. The constant adrenaline spikes your body is having to deal with every time you do aerobics or stand for too long will be exhausting and trigger your sympathetic nervous system.

Honestly, I can’t stress enough about the importance of learning proper pacing and energy management techniques. It takes time to get the balance right, as too little and you will become deconditioned, but too much will make you feel awful and mean you can do less, setting you back. A steady/consistent activity level is best and will help you manage your energy better.

We got my son to do the Bath ME clinic’s energy diary to see where he was wasting energy. You use this guide to grade everything you do for a fortnight as green, amber or red activities and work out where you are doing too much red and amber and how that’s impacting your overall energy. Even things like watching a new TV show or movie are red activities, whereas rewatching something you enjoy can be green or amber. Then you can start making sense of it all and learn how to plan, organise and pace your energy. It takes time to work it all out, but it’s worth doing.

@PermanentlyDizzy I will start taking the ivabradine tablets and stop stressing for no reason. I am desperate to feel normal again.

You're right, I will start with reclining/floor exercises as I can't bare the thought of over exerting my body right now. I struggle to keep up with my 4 kids, the eldest being 7 years and youngest 9 months old, it's exhausting as it is. I haven't managed to cook properly either, with standing and heat it gets too much.

Recently I've been feeling my heart racing while lying down/before bed or wake up with that feeling which sets me back. Is it normal to feel worried when I'm alone with the kids? How do people go on with their life when they have children and struggle with POTs 😔

I appreciate your advise on energy management, hopefully I can develop some sort of routine whereby I know exactly what I can and can't do and understand my body's limits.

I used to love cooking, but had to accept I needed easy, quick options as I can’t stand over a hot cooker. One pot dishes, casseroles, stews, cobblers and oven risottos are good. You can sit to the table to prep the ingredients, then just stick it in the oven or on the hob and check it occasionally. Pasta bake is popular with my dc’s and equally easy. I keep organic jars of sauce and frozen veg available and use the microwave instead of standing at the hob. I have three teens, so we make sure there’s always a decent quality ready meal they can cook if I’m not up to it and dh pulls his weight with cooking as much as he can. We also have one pizza (albeit frozen veg pizza) night a week, as that’s super easy. Summer is easier, sit to chop/prep salad, put out lots of ‘picky tea’ options and they can help themselves.

The nocturnal heart racing episodes are very common. I get them worse than my son and for a while, when I wasn’t managing my energy and trying to push through all the time, they were one of my worst symptoms. Iirc, Dr Gupta’s sleeping videos explain why we get them. Deep, yoga type breathing, like they suggest for panic attacks helps, as it calms the vagus system. There are different methods, but basically you breathe deeply through your nose, making sure your stomach rises before your chest, which means you are inflating your whole lungs, not just the top. Breathe in for a slow count of 4, then hold for 4, then slowly exhale through your mouth. Repeat until you feel calmer. It takes a bit of practise, but it definitely helps.

It’s natural to worry, but it’s important to remember that, although PoTS is really horrible and exhausting, it’s not dangerous. As long as you are sensible, do your best to pace and sit down as soon as you start to feel faint or get pre-syncope symptoms you will be fine.

I'm the same I love cooking but I've resorted to buying a pressure cooker and an air fryer for quick and easy meals. DH has been helping with cooking and school runs which is a relief but dreading when he goes back to full-time work. I feel all over the place at the moment, trying to understand my body and the changes it's going through and also not having a consistent structure to my day/week as it's quite unpredictable with an active 3 year-old and a baby.

Do you find that hunger triggers your PoTs symptoms?

I find the nocturnal heart racing is worse before/during menstural cycle. It's horrible. I will be looking into the breathing techniques, thanks!

@PermanentlyDizzy can you resend the link to the leg exercises please as the previous link didn't work. Do you find that you get just leg aches or arms aching too? Or it could be whole body pain in general.

The other thing I'm struggling with is the pressure in my head, any head movement and my headache intensifies 😔.

@Perry13 Yes, low blood sugar is a known PoTS trigger, so hunger will trigger symptoms. A lot of people find smaller, lower carb meals, help keep blood sugar stable and that also helps symptoms being triggered by blood diversion to the digestive system after large and/or carby meals. I went keto in the end and it definitely helps, but you have to go through a period of feeling much worse first.

Most of us find our symptoms are worse premenstrually and lots find the duration bad as well. My nocturnal racing ramps up about 10 days before and gets worse until day 1/2, then settles to it’s normal level.

Hopefully this link for the exercise programme should work. If not, Google ‘ Instructions for POTS Exercise Program—Children’s Hospital of Philadelphia’.

Leg and arm aches can be in response to blood pooling after standing, but aching all over or in random places at different times is common as well. Not every symptom is fully understood yet, but generally, most things can be traced back to autonomic dysregulation, blood pooling, poor blood-flow or the sympathetic over-reactions.

I have complex migraine, unstable neck vertebrae (which triggers cervicogenic headaches) and TMD, all of which are common comorbid condition to PoTS, particularly in the EDS/hypermobile cohort of PoTS patients. Lots of people with PoTS suffer from all manner of headaches and migraines. Some are triggered by lack of bloodflow when upright, others because your brain tries to nab blood from neck and shoulder muscle to compensate, which can cause tight neck muscles, which trigger headaches (known as coat-hanger pain). A large majority of us have headaches triggered by air pressure variations and also find our PoTS is worse on low pressure days or when there’s a sudden drop in pressure.

I’d recommend downloading the Migraine Buddy app and using that to check what air pressure is doing, as well as to track your activity/food and headache symptoms. It is really useful for working out your triggers and you can print out reports to take to your doctor if you get referred for the headaches. Don’t just suffer with the headaches though, as there are specialist headache clinics in most NHS trusts and there are treatments that can help. Your GP should be able to refer you.

When I told my GP about the headaches she brushed it off as tension headache and told I should try Amitriptyline for few months before she can refer me to a neurologist. I don't think any of drs at my GP are aware of PoTS or don't take it serious because I've had no support whatsoever from them. In all honesty the information you've given me throughout your messages have been more helpful than the GP 🙄.

I sometimes skip meals (bad habit) which has exacerbated my symptoms and can take time for me to recover from. Glad to be aware of it as I keep telling myself it's all in my head.

Will these symptoms ever go away!? 😔. What do you take for the headaches? Sounds rough what you have had to deal with ❤️.

I can't thank you enough @PermanentlyDizzy for enlightening me on how deal with some of the PoTS symptoms. I have been feeling very lost and feel like my life has been on hold for the last 5 months or so. I miss my old body/self 😔.

@Perry13 Unfortunately, lots of GP’s and hospital Consultants are completely unaware of PoTS. Some Cardiologists still insist it doesn’t exist. We usually have to educate them as we go along. Younger/newly qualified doctors are usually keen to learn. The most informed medical professionals we’ve come across have actually been paramedics. It seems it’s very hard for many medical professionals, particularly old-school doctors, to understand that it is so much more than just a bit of a fast heart rate when you stand up. Far too many still believe it’s just a fainty teenage girl thing, that they grow out of and fail to understand the massive impact it has on people’s lives. Things are gradually improving though. A few years back, not only had no doctors heard of it, they didn’t want to listen or learn either. Thanks to awareness campaigns by PoTS UK and STARS/Hearth Rhythm Alliance, more doctors have at least heard of it these days.

As for it going away. It can resolve for some people, especially if it was post-viral or triggered. For those of us with EDS underlying it, it doesn’t tend to, hence all the management/pacing in order to be able to live as normal a life as possible. It’s not always really bad though, it can wax and wane and you gradually learn how to manage it and create your new normal.

Unfortunately I was unable to tolerate the preventative medications for migraine and the triptans caused a rather scary cardiac event, so they were out too. My cardiologist and physiotherapist want me re-referred to Neurology as there are newer, better treatments now than when I was last seen (I was under Neurology for 10 years before I knew I had PoTS). I have an ice-cap which seems to help for some migraines, but not others.

For the cervicogenic headaches and coathanger pain I use the Syndol with the muscle relaxant in (you have to ask the pharmacist for it) alongside wheat packs, as that’s the only thing that helps. When it has been really bad I have been given a short course of Diazepam.

Amitriptyline is contra-indicated with Ivabradine, so you may need to double check it’s ok to take both. (I was given it for my neck pain, but couldn’t take it, although I am on the highest dose of Ivabradine these days.)

Do join Pots UK and also their Facebook page. Stars/The Heart Rhythm Alliance are also great and hold a patient day every year. Also, the Dinet/Dysautonomia International forum is well respected by PoTS Professionals and was where I was advised to go for support by my Consultant when I was first diagnosed.

There's no justification for the drs/cardiologist anymore, it's just not good enough. I've had a quick look at PoTS UK and STARS and it seems very useful. Will be browsing through the website as my bedtime reading.

I didn't know it was contra indicated as I wasn't interested but the GP mention it again I'll remind them of it so thanks for mentioning it.

I need to figure out how to deal with the pressure in my head as bending and moving too much becomes bothersome. Hopefully I can track it on the app and get to the bottom of it. It feels like there's so much to work around and get used to 😔.

@PermanentlyDizzy do you happen to know if the contraceptive pills makes PoTS symptoms worse or better? I've come of it in the hope it was helping but the other day I read someone mention the pills helped her symptoms.

@Perry13 I am not allowed to use oral contraceptives due to some of the migraine types I have, so it’s not something I know a lot about. I know some of the mums on the parents of people with PoTS support group say some help, some can make it worse. If I get chance I’ll ask which is which for you.

@PermanentlyDizzy I would really appreciate if you can ask and let me know. Thanks!

This thread has taught me something - I was about to go to the doctor as I've been getting incredibly faint after exercise but mine might be just low blood pressure. My sister gets this too and was fainting so often they did a tilt test on her but not sure whether she was ever official diagnosed. I don't know if these things run in families!

Just found this thread, really interesting read. I think I have pots - though loosely diagnosed with standard tachycardia and syncope. My HR jumps from 70 when I'm sitting to 150+ bmp but as far as the Drs are concerned I'm too young for any treatment.

I relate so much to the faff of cooking - it makes me skip meals which then makes me feel even worse. I'm fed up of spending my life bent over waiting for me to stop feeling dizzy.

I'v had a few TIA's which almost seemed a relief to the cardiologists as they could pass me over to neurology.

@WindyBot That's how my symptoms started, after exercise. My DS was 3 months old so I tried to get back into doing some mild exercise, I was feeling quite dizzy after it but I just assumed I wasn't fit but on one occasion I passed out and since I've not been able to do much. The drs assume it's a post pregnancy trauma to the body.

@luccyloo do you mind if you tells us how old you are? I've not heard of being too young to be treated since PoTS is common in younger age and many teens are on medication for it. Has your PoTS been triggered or something you've had from before?

@Perry13 Apparently it’s best to avoid progesterone only pill, which would include the mini pill. Unfortunately it’s trial and error to see which of the others helps.

@luccyloo are they sure they were TIA’s? I have had several episodes which were thought to be TIA’s at first, but ultimately they decided weren’t. Neurology tend to be hopeless if it is PoTS, as they don’t do ‘Autonomic’ Nervous System issues. I was under Neurology for over 10 years, told at different times I had MS, Lupus and eventually ME (although they told me they didn’t actually believe in ME ) and finally abandoned by them. I was diagnosed when I heard about PoTS, did a stand test at home and organised a private referral to one of the doctors listed on PoTS UK via my GP. That doctor traced my symptoms and medical history relating to PoTS back to when I was 7 years old and yet I was only diagnosed when I was 46.

As for being too young for treatment, don’t let them fob you off. The vast majority of patients are young girls in their early teens and my son was investigated and treated between the ages of 12 and 13. He’s now 17 and has been out of school since he was 14, after over a year or ending up more and more part-time.

@WindyBot they are starting to think it runs in some families. My son and I both have it and in the parents support group there are lots of us that have it alongside our child/children. In our case it’s secondary to Hypermobile Ehlers Danlos Syndrome (hEDS) and it seems more common for more than one family member to have it if there is EDS or hypermobility in the family. We think my maternal Grandfather also had PoTS.

@Perry13 @WindyBot @luccyloo

PoTS UK are doing a zoom webinar for new diagnosed people or those awaiting diagnosis. Thought it might help.

This is the link to register.

Ah, that's great! Thanks @PermanentlyDizzy for sharing. Date saved in the diary ❤️.

Registration is closed 😔

Have a look at Mast cell disorders too . It can all be related especially if other symptoms present too.

@PermanentlyDizzy sorry to bothering you again, I've started the ivabradine tablets, how long did it take you to notice it's working? Did you have any side effects? I've noticed my Apple Watch will show my HR go as low as 38/48 for a split second or so before it goes to usual high HR, does that sound normal or is that an Apple Watch error/confusion.

Interesting thread. For those who have been diagnosed without a tilt table, how long do you need to be sitting or lying down for before having your pulse taken?

I did an active stand test to be diagnosed and lay for about 30 mins before standing (longer than meant to as they couldn’t get the equipment to work!)

Thanks Namechange

I had a very quick test at the GP surgery with a nurse but only lay down for a minute or two for the first reading. Heart rate increased by 25 bpm when I stood up.

I’ve since bought an oximeter and today for instance had a reading of 67bpm sitting down which when up to over 103bpm on standing.