Autonomic Dysfunction/NNH/Prof Matthias/POTS

[loosebones]

My pulse has been really playing up today - double what it should be. I rang my Dr for some advice and the receptionist called back saying they'd had a letter from the cardiologist who had recommended I start on fludrocortisone. I picked up the prescription and it seems I've been given a diagnosis of POTS. The issue? I've not got any directions on how many or when to take it...how helpful!
Has anyone else been prescribed fludrocortisone? If so, I'd like to know about side effects, if it helped etc
Thanks

[Gaia]

My pulse has been really playing up today - double what it should be. I rang my Dr for some advice and the receptionist called back saying they'd had a letter from the cardiologist who had recommended I start on fludrocortisone. I picked up the prescription and it seems I've been given a diagnosis of POTS. The issue? I've not got any directions on how many or when to take it...how helpful!
Has anyone else been prescribed fludrocortisone? If so, I'd like to know about side effects, if it helped etc
Thanks

I'm on fludrocortisone (have been since November). Honestly, it's not helped me in the slightest, I've just had the side effect of weight gain which is rather frustrating really. Some people have found it to be very effective though so my story is probably not the most promising to read! (Then again, midodrine isn't helping me at all either, in combination with the fludrocortisone so currently waiting to hear back from my GP since she contacted London)

[star gazer]

Hi loosebones, what works for someone doesnt necessarily work for someone else My son started with fludrocortisone in January, the pharmacist told us it would be a month before they reached optimum level with the cortisol. He has had only a little weight gain but was very very skinny to start with his bmi was too low. He also developed achne (a listed side affect) but as he is 17 I wondered if he would be more prone. it can also affect your mood listed side affects are euphoria or feeling low and my son is very low but difficult to judge that one as he has been like this for a while even before the meds. I took him to the docs a few weeks ago to get his heart rate checked, his upright rate has dropped a bit but still tachy at 120. He is also still getting the odd heartbeats that do a weird run that makes him feel really unwell, it showed up on his ecg before starting the meds. So for him it has not been wholly successful. We do have the option of Ivabradine which the hospital (St. Marys Paddington suggested) but he had already started the fludro by the time Brompton got that letter. He cant used Midodrine because apparently it causes urin retention in males which can lead to catheterisation
I think you need to see how it goes but remeber you cant just stop taking them suddenly once started, if you need to stop them it has to be under supervision at a monitored reduction in dose over a few weeks. I think it can also depend on the type of pots as to how effective the meds are, son cant use Beta blockers as his base b.p is too low and betablockers lower the bloodpressure (so they are better for people with normal-high blood pressure)
Make sure you talk to the phamasist if you are unsure about how to take them, they also have to be stored in the fridge and you also need to ask for a blue card to carry with you to state you are on steroids.
I hope they do the job for you
love
star gazer

[sheppeyescapee]

Am feeling rather rough this evening. When I got up from my computer chair I felt very dizzy, my heart started racing, I felt nauseous, really hot, started sweating excessively, stomach felt really acidic. Felt like my head was spinning and like I couldn't breathe. Laying in bed unable to sleep it feels like my insides are on fire. Luckily I didn't faint but my vision did go for a few seconds. This episode rather scared me. I hate feeling this way.

Sorry for the ramble just a bit on edge

J

[AnnaH]

Sorry you're feeling so rough.

I think I've been having a similar problem, on and off. I keep getting terrible palpitations. Of course, the doctor always blames anxiety and I won't say I don't ever get anxious. However, this is when I'm not even thinking about anything, I'm just going about my day. For instance, I went upstairs to get my watch and my heart started pounding, I felt dizzy and sick and really faint. So I lay down for a minute and felt better. Got up and immediately felt bad again.

I know I can get very low blood pressure, so maybe that was it, or maybe it is POTS. Unfortunately, I can't get my doctors to take that possibility seriously, even though I'm a known 'fainter' and have collapsed in the clinic before now (BP 80/40 for a while).

I'm told this is not particularly dangerous or anything, just unpleasant, which is reassuring but like you, I hate it when it happens.

[star gazer]

hi sheppey sitting at the computer or in a chair is a classic trigger as it causes the blood to pool to the bottom of your legs, I had a nasy episode like that during a meeting when at work, had been sitting for 20 mins and started to lose vision etc so I made my excuses and went for a walk to try and pump the blood back up. It always happens when I sit so now I make sure I get up and down regularly to try and stop it from happening. the last time was at my ATOS medical where we had waited an hour before being called in, i had been in the wheel chair and had tried moving my legs around but that length of time was just too long, by the time we got into the doctors room for the medical I was in such a state they had to lie me on the couch and coducted the interview from there, the doc said that I am not the only one who has had their interview from the couch! felt better after half an hour and could actually speak properly without sounding drunk.
Anna, stairs are another classic trigger because pots make us exercise intolerant so the action of going up the stairs will cause palps and presyncope which is one of the reasons that when nhnn do a 24 hour b.p test they make you go up and down stairs to see how the heart rate is affected and the b.p. its a horrible feeling and can be quite dodgy if you feel dizzy as you could lose your balance so going up slowly is better but can still cause problems. The muscles in your legs need the blood supply to do the work of going up the stairs which means it is not going to the other places as effectivly (the brain) which is why the heart beats fater to try and pump more blood up and why you feel faint as not enough oxygen getting to the brain.
sg

[sheppeyescapee]

I've been rather tachy today. Just walking from the bedroom to our mailbox outside sent my heart racing I'll get my support to ring NNH next week because I can't be that far off getting seen

[madmum]

My son has had a couple of issues of feeling unwell at school. He has complained of pounding headache,gone pale,felt dizzy and nauseous and almost fainted. I bring him home and give him salty snacks and a drink and chance to rest and after 20minutes he is feeling better. Does this sound like p.o.t.s? His rheumy said to monitor him. He is 12. Any advice welcome.

[AnnaH]

Anna, stairs are another classic trigger because pots make us exercise intolerant so the action of going up the stairs will cause palps and presyncope which is one of the reasons that when nhnn do a 24 hour b.p test they make you go up and down stairs to see how the heart rate is affected and the b.p. its a horrible feeling and can be quite dodgy if you feel dizzy as you could lose your balance so going up slowly is better but can still cause problems. The muscles in your legs need the blood supply to do the work of going up the stairs which means it is not going to the other places as effectivly (the brain) which is why the heart beats fater to try and pump more blood up and why you feel faint as not enough oxygen getting to the brain.
sg

Useful to know. I've had numerous 'accidents' on stairs. Last year, I fell and dislocated my tail bone, which still isn't quite right. I've fallen so many times, but the worst was the time I broke my foot after falling. I have a lot of 'nearly falls' and 'almost faints' but I'm getting better at sitting down before anything nasty happens. I'll try to go a bit slower.

I don't fancy my chances persuading any medical types to test me for it - I've already exceeded my yearly 'quota' of things wrong with me

But it is nice to know that my palpitations aren't because I'm desperately sick, or just bonkers. Although of course, relaxation has to be good if I'm low on oxygen, whatever the reason.

[AnnaH]

I've been reading up on POTS and it seems I'm an absolutely classic case. However, the question is what to do about it, if anything.

I notice that on American sites, there is a lot of talk of POTS and a lot of medication mentioned (much of which is not licensed for such use in UK), whereas the UK sites are a lot more conservative and focus more on self-management. I have major concerns about the over-use of medications so I think I'll stick to the UK sites.

I definitely have problems with fluid levels, as mentioned as a symptom of POTS. I drink a lot, all the time, but am frequently dehydrated so I get tested for diabetes a lot (so far, negative, thank goodness). It might be worth mentioning to my endocrinologist that it might be some sort of autonomic dysfunction. In the meantime, I'll keep knocking back the water - and eating the salty food (olives are my passion).

My main problematic symptoms, apart from falling down the stairs rather too often, is that when I lie down to sleep I simply cannot wake up. Or rather I do, but I think the postman is convinced I'm a mad woman, as is anyone who tries to phone me when I'm asleep in the day, as I cannot think. I just talk gibberish and can't work out which way is up! It's really embarrassing but I might just start telling people I'm ill, rather than trying to come up with a more accurate explanation. I need to start explaining to people around me that I can't wake up like 'normal' people and may need some time/patience. But if it's 'Alan' or 'Malcolm' from Mumbai, phoning from 'Microsoft' to say I have a virus, or a PPI 'consultant', they deserve all they get if I sound like the Muppets Animal on the phone at them.

When I faint, which is mercifully not that often, I tend to be totally confused and act nutty. One time it happened, I landed on this woman's lap in Costa Coffee and was apparently talking nonsense.

It would actually be quite nice to have POTS rather than be an occasional raving idiot who likes to lie down in queues. At least it's an explanation. I might run it by my GP, not as a diagnosis, but just to see what he thinks of the idea. I am diagnosed with EDS so its not like I'm actually asking for another diagnosis.

[star gazer]

78% of people diagnosed with EDS also have pots or other autonomic issues so if you have symptoms then it is highly likely you have pots.

madmum if you son sees a paed or even the g.p a simple test is to ask if they can take his b.p and pulse when lying down and then after standing up for 3 mins to take it again while still standing, if his heart rate elevates when standing and stays elevated to +20bpm or a heart rate of 120 then that would indicate postural tachycardia. My son was picked up with this at 14 by the paed but it took quite a while to get him to the right team, it was after he was diagnosed with EDS at 16 that they could get him to be seen at the royal brompton (they wanted him to see someone with an interest in pots) he was then given a tt test which confirmed the diagnosis.

Anna, normally when pots is suspected the docs at nhnn will normally go doen the self help route to see if that helps, they do like to run tests to see what type of pots you have as this can depend on the treatment given, if the self help measures dont control the heart rate then they move on to the medication rout, I have been taking Midodrine since 2008 and it is prescribed via the hospital only as it is unliscenced however as it was passed for use in the USA and europe I felt that it would be ok to give it a shot, it is not prescribed for boys as it can affect urine output so they normally try something else. All in my house with pots have exesive thirts (son was tested for diabetes insipidus) but it was explained to us that as we also all pass a lot of urine (always need the loo ) then we have to make up for the fluid loss through peeing by drinking more. Hydration is important for pots. As you have been diagnosed with eds I think it would be reasonable to ask if your g.p could refer you to the autonomic unit at nhnn (national hospital for neurology and neurosurgery) it will be a long wait but I think if you do have pots it will explain a lot of those unexplainable things like being too hot/cold light headed sweating balance any gut problems can also be autonomic as well as eds being the culprit. Disturbances in the autonomic nervouse system can cause quite a few blips. nhnn take referrals from all over the country for people over 18 years of age. before that point madmum you might need to ask for a referral to a cardiologist with an interest in pots (most will know what it is and what to look for)
best wishes
star gazer

[sheppeyescapee]

I'm always thirsty didn't realise this would be linked, I have been tested for diabetes nearly every year since I was 13! Always comes out that I don't have it Having a hard time controlling it at the moment, almost fainted while we were trying to put new bed together this evening. Heart rate has been hovering around 110 resting and shoots up to 140-150 when I do anything, literally anything just walking to the bathroom does it Drinking like crazy, been using the nuun tablets in my drinks. Get dizzy when using the BP monitor.

[AnnaH]

Today I did a few experiments as I've been feeling 'bad'. I can't explain what 'bad' is, except I feel kind of breathless, weak and heavy but it's been happening for years, on and off.

So I downloaded a pulse taking app for my phone and noted my resting pulse, sitting (82 bpm) and after I'd gone up stairs, slowly (140 bpm). Then I tried lying down and relaxing (72 bpm), standing (almost immediately 101 bpm, even though I stood up slowly). I've realised my 'feeling bad' is probably tachycardia, which is particularly interesting as my grandmother suffered from tachycardia all her life and they never did get to the bottom of it. I'm definitely badly exercise-intolerant, but as I've knackered feet and a bad chest, that isn't really an issue for me.

Fortunately, if I rest and relax, my pulse rate goes down to fairly normal. But it does explain why I've had problems with salbutamol (Ventolin) which I have to take for asthma, and why a couple of lattes makes me feel awful. Also why I'm such a cheap night out, getting drunk on a couple of glasses of wine. It might also explain the horrible side-effects I've had with other medications, with vertigo and palpitations. Prozac was the worst for that.

I found out I'm already taking a lot of the advice for POTS. I drink constantly (tea and water), especially since I've had chronic kidney infections in the past and get dehydrated very easily because I also pee constantly. I wear woolly socks in bed because my feet get so cold. I have neuropathy in my feet, blamed on my severe Achilles injuries, but my doctors are mystified as to why my circulation in my feet seems so good when my feet are normal temperatures. But I have been told to keep my feet warm.

Due to my chronic asthma as a child, I always sleep with at least 4 pillows (lying flat makes me panicky, which I put down to having had bad asthma). So that's good for POTS.

I've always assumed that the dizziness, fainting and other problems I get were due to unstable blood sugar, low blood pressure and insulin resistance. I'm wondering now if it was just POTS all along. However, as I'm in the doctor's every five minutes at the moment, I'm going to store up this information until they've sorted my hip out, and my endocrine problems, and then I'll hit them with the POTS info.

[star gazer]

My son and I both have reactive hypoglycaemia and that is linked to Auto Dysfunction so missing meals is not a great idea we try for small meals up to 5 in a day although now I am not on solids it is easier to get a quick hit with the Ensure that I have for food.
remember Tea is a diuretic unless caffeine free and can make you lose for fluid. I to was a cheap round alcohol wise but have not drunk for 12 years as that was the point that I noticed the tachy and alcohol link. Again, same with the ventolin as it is a vassodilator and eds veins are already having problems with constriction when I take ventolin tho the tachy from that passes quickly. its the other things that trigger the pots problems that make that tachy last longer.
Anna it does really sound like you do have pots as everything you describe build up that picture. I think that you should ask for a referal. (my daughter was advised to notify the DVLA because of the type of pots she has which is vasodepressor syncope type).
bw
sg x

[loosebones]

My blood sugar is also really unstable but I never realised this could be linked to POTS.

Tomorrow I've got the go-ahead to start on the fludrocortisone (now that I finally have directions for use) so I'm hoping it will help as this weekend was really hard trying to cope with my heartrate high whilst being in charge of 29 brownies on pack holiday. It made it very difficult and I struggled for breath when it got too fast.