PoTs ?

[jimbo1605]

It looks like Pooh Bear (the wife) has PoTs in addition to the SLE diagnosed a few years ago now. Does anyone have experience of this please - how to get the formal diagnosis and what treatments are and how effective. Many thanks

[Amber83]

Hi, There’s a website that tells you quite a lot of information

potsuk.org

I think to diagnose a cardiologist does various tests. The most important one being a tilt table test.

[KayHimm]

I am sorry your wife is coping with more symptoms. What is she experiencing? I have autonomic neuropathy with orthostatic hypotension. It is important that your wife get properly diagnosed as there is a lot they can do to help her. Could you ask your GP for a referral to a neurologist or cardiologist? They may order a tilt table test which will show them more specifically what her heart rate and blood pressure does when she stands.

Best of luck with this.

K

[katidid]

I have tachycardia which is related to POTS only that it occurs even when I’m not upright. Interestingly POTS is common across a number of autoimmune illnesses. It can’t be managed pretty easily, via your Primary or Cardiologist.

[jimbo1605 in reply to katidid]

Many thanks for your reply katidid. We were struggling to try and explain all of the cardio and neuro symptoms but now it looks like we have found an answer.

[Melba1]

Hi Jimbo, sorry to hear your wife has PoTs. I have a lot of brain/ neuro issues from lupus but the autonomic dysfunction (including PoTs) is one i dislike the most because it is so debilitating standing up and worsens the fatigue.

The simple test is doing a lying heart rate then a standing one, if it raises by over 30 beats per minute that is a pretty clear indicator. GP could do this but even rheumys are reluctant to ‘officially’ diagnose it so you’d need a cardiologist or referral to the national neurology Centre to the autonomic testing unit. That’s how I was diagnosed but I’m not sure I’d advise it as it’s quite a tiring, intense, unpleasant experience especially if the disease and PoTs is in a bad phase. They force a reaction by tilt table and causing pain (freezing your hand, needles, making you repeatedly stand up, sit down, stand up - over 3 days, I was in a good phase lupus and PoTs wise when I went but still exhausted after and I thought the older lady doing it with me was about to die it was so awful for her - just continuously made to faint. Everyone on the testing except me cried (and that wasn’t me being brave, just not in an active phase).

They are not very interested in helping much with the PoTs even after a diagnosis as it is considered unpleasant but not dangerous (except the fainting) There are some medications that increase blood volume but they said for their lupus patients it’s mainly lifestyle changes and getting the disease under control that will then help all the neurological problems including the autonomic nervous system (often mainly PoTs).

Does your wife’s get better/ worse with the other symptoms? My rheumy and I have worked out that mine comes along with neurolupus attack but not always exactly same time and is made much worse by certain medications (mycophenalate and rituximab sent me losing consciousness from severe PoTs).

Here are the lifestyle changes i was told to do and do work very well:

1) Drink loads especially on waking before getting up and big amounts in one go rather than sips. Helps push blood back from feet when we stand.

2) Never eat a big meal. All the energy goes into digesting that and not in keeping our heart rate normal

3) Strengthen muscles in lower legs. If she’s been very fatigued by it and unable to walk much etc it makes the PoTs so much worse. Leg lifts in bed, calf raises, lying down cycling if really bad all help.

4) Don’t stand still! Took me ages and multiple black outs in queues to realise this one. Flexing toes, walking on spot or just sitting on the floor if it gets too bad!

5) Depending on kidney health/ other conditions, eating more salt helps keep blood volume up. My sons have similar and were told by the cardiologists to eat 3 packets of very salty crisps a day. I crave crisps when my PoTs is bad but with dodgy kidneys it’s a balance.

Hope you find something to help. It’s quite common in lupus and counts as one of the neurolupus criteria but anything to do with the nervous system and lupus is so poorly understood by most neurologists and rheumatologists it’s still quite unexplored so not much help out there. I think you’ve had very bad neurology experiences too and they can be dismissive of PoTs (sone have been told it’s an anxiety, in your head type dismissal - when it’s quite clearly a physiological reaction of a disordered nervous system for many of us)

X

[jimbo1605 in reply to Melba1]

Thank you Melba1 for a lovely and very helpful reply.

Her heart rate goes up by 40+ when standing and nearly falls over if she stands up too quickly. Her heart rate has been at 140+ with any reason. She has all of the symptoms too including tremors, dizziness, breathing probs etc.

Her problems seem to be independent of SLE and only when she stands up.

We will try your lifestyle changes suggestions and see how we go. Seeking another referral to cardio now. thank you

[happytulip]

Hi Jimbo. I have Lupus but my first presentation was Pots. One week I was rock climbing in the peaks and the next week I couldn't stand up for more than 1min 6 seconds without collapsing.

There are many myths about pots. Most think that it is a cardiac problem when it is actually a neurological problem with cardiac symptoms.

Some cardiologists are very good and knowledgeable about POTS, others are not. I won't bore you with the 2 year delayed diagnosis hell that I went through but my advice would basically be this.

1. Follow instructions in the POTS UK website regarding lifestyle changes.

2. Get a pedal machine at home so your wife can sit on the sofa and pedal away, it strengthens the calf muscles which act to pump the circulation back up

3. Big one: Get a referral to Queens Square Autonomic Unit. They are the national specialists in POTS. All 6 relatives of mine with POTS have had second opinions there and all agree that they are the most thorough with two days of solid tests after us all being fobbed off in 6 seperate hospitals.

I also ensure that as well as drinking plenty I take a dioralyte or rehydration sachet in extra hot weather to top up the minerals and salts that I lose in this heat.

It is a horrible condition but can be managed. But I really would advise a referral to the autonomic unit.

Good luck

[jimbo1605 in reply to happytulip]

Thank you for your reply and in particular the place to be referred which i will now look up. Our GP has been doing some preliminary tests and they all look like its PoTS. Hopefully she can get referred.

[happytulip in reply to jimbo1605]

It's your right as a patient to get referred to your choice of hospital so in my opinion it's best to go to the best of the best. National Hospital for neurology and nervous diseases. Let us know how you get on.

[jimbo1605 in reply to happytulip]

Many thanks again. We have a great GP but he is reluctant to do out of area referrals - but we will give it a try.

[happytulip in reply to jimbo1605]

I appreciate that bit if it's pots then you need a specialist. There is a list on the POTs UK website.

From my experience (and others) avoid Addenbrookes in Cambridge like the plague (for POTs that is, they are brilliant for Lupus).

[jimbo1605]

Just to update all. It now looks like Pooh bear has anemia and based on all of the blood tests to date its looking like autoimmune haemolytic anemia. This is where her immune system targets red cells to destroy causing a lack of iron and oxygen carrying ability.

Interestingly her iron levels looked all ok from the previous tests and it was only when they tested how the iron was being used was the problem discovered.

Hard to distinguish where pots ends and anemia starts so we will address anemia first and see what is left.

Thanks so much for all your replies.