Recovery from PE

Hi Liz

You very kindly spoke to me on the phone a few weeks back and sent me some information on PE, including this forum. I developed PE at term when I had my daughter in May, and unfortunately have not been right since. To cut a long story short, I'm having really severe headaches and am so tired, I also have this really strange dizzy/wooshing sensation through my head and body sometimes, sounds strange and makes me feel really unwell.

My BP I think has never been under control really since I gave birth, it was fine and then I'd have it taken again a few weeks later when I was feeling unwell and it would be high again, despite being on the same medication (I had high BP before pregnancy controlled by 5mg amlodipine). I've been investigated extensively but it seems the docs have no idea what to do with me, I'm now on 5mg amlodipine, 2.5mg rampiril and 10mg bisoprolol per day since last week, it does seem to have come down a lot but haven't taken it that many times. My rampiril dose was up to 10mg but my BP seemed to increase! I ended up back in hospital again last week with high BP and pulse, it sounds mad but I seem to feel SO unwell when it's high but I didn't think you could feel unwell from your BP. When I take my BP myself at home it seems so variable e.g. it can go up/down by 20-30 points in a minute or two. I know BP varies throughout the day but mine seems to vary by the second. (My monitor has been checked by the consultant and is reading correct).

I sound like I'm obsessed with my BP and it's stressing me out, I don't think that's it though, it's just the only objective thing that seems to evidence how ill I'm feeling. I had my BP checked hundreds of times when I was pregnant, and check it fairly regularly at home, it genuinely doesn't stress me out so I think the readings are accurate and not just me getting stressed about it.

Do you have any idea what the problem might be? Or anything I can do to help? I'm starting to feel a bit down, my husband as taken so much unpaid leave from work but will have to go back next week. I'm stuck at home with a baby (who is amazing and I feel like I'm missing out on her growing up) feeling really unwell and no-one has any answers, apart from this can't be related to the PE as that is an acute illness. I don't have PND but as it's nearly 5 months I'm definitely getting more and more fed up.

Hi !

Just wanted to welcome you to the forum.

I had PE in August 2006 . I never had problems with my BP before pregnancy but after the PE i have never managed to get off my BP tablets. I understand the feeling of being unwell when my BP is up. The headaches are really painful and occassionally i get zigzags in front of my eyes.
But the majority of the time my BP is well controlled and i feel well. I take labetalol 200mg twice a day.

Hope your doctors get you sorted and that you find the forum useful.

Bell.xxx

hello - I'm another one who never came off meds for High BP (I have two parents who both have hypertension, so I was probably heading that way anyways.) I didn't have the problems you've been having, but its well worth keeping the doctors looking for reasons. Some BP meds have adverse effects, and there is a huge range to choose from. My GP likes to mix them rather than have a high dose of one and I'm currently on amolodipine and co-diovan.

I would also not rule out a mild form of depression and or anxiety. wihch would be completely understandable. I suffer from mild clinical depression intermittently and I know that my BP is severely affected by how stressed I am (like you my blood pressure can vary tremendously in a few minutes - the doctors call it labile!).

I don't know if any of that is helpful, but I did want to send you my sympathies. Its a real pain isn't it!

Thank you both so much for replying and the welcome. I will post my story when I can but I know I've been so lucky, my baby girl was born on her due date and has had no health problems at all. I am glad it's me who's been the ill one in all of this.

I really don't mind if I need to be on more medication now, after all if my BP is up I'd much rather it's controlled. It's just the feeling so unwell that is getting to me, I can't get out much as I really need to be able to drive to..and I feel far too dizzy to drive. I'm sure I'm not depressed, I even did one of those questionnaires and scored quite low. I've had depression a long time ago and it doesn't feel like that, I guess I just feel so frustrated. I expected to be OK weeks/months ago and I still don't - before I was in hospital last week I actually felt as bad as I did in the HDU.

Sorry that my first post here is so moany!

Bell I see you are pregnant, I hope it is all going well x

Hi Marthas Mummy,

Sorry I havent got back to you as quickly as I'd like. Welcome to the forum.

There a couple of things that I thought of that might be of use.
Firstly (and the simplest!) is the monitor you use. I know you said you compared it to your consultants measurements but this doesnt mean it is always accurate, it is only accurate on that occasion. It is essential to use a machine that has been clinically validated as the prgramming inside the machine is the guaranteed to be accurate within 1-3% depending on the model of the machine.
In addition to this Im wondering if you have an underlying heart murmer or rythm change to your hearts beat. These can be entirely normal but be exacerbated by pregnancy. If this is so then using a monitor that can detect & differentiate this is essential.

All digital blood pressure monitors work by measuring the vibrations of the artery beneath the cuff as it deflates & the program inside the machine turns these vibrations into a number – this is your blood pressure. However, some people have abnormal rhythms of their heart. The extra fluttering from the hearts rhythm can be picked up by your digital monitor & interpreted as a blood pressure reading. This often presents as fluctuating readings even within a few minutes or error reading occurs. If you suspect this might be an issue for you, it is important to either have your blood pressure checked manually (using the pump up & listen method) or by using a monitor that has specific technology built in to take into account the abnormal rhythm This technology is called PAD or ‘Pulse Arrhythmia Detection’ and can recognise the difference between the vibration of arrhythmia and that of a proper heart beat.

Im not saying your BP doesnt go high at all but I do wonder whether it is the actual fluctuation that is making you feel unwell? Equally you dont have to feel stressed to have your body react and push your BP up.

Sadly there are a few women whose blood pressure never really returns to 'normal' after a hypertensive pregnancy but I do think it is worth discussing with your Consultant Obstetricain or even a blood pressure specialist.

You can find a list of Blood Pressure Experts here

(They are not just consultant cardiologists etc. as they have all done extended research into Blood Pressure.) I know particularly of one specialist in London who only deals with labile (fluctuating) blood pressure so maybe that is worth investigating?

The other thought was not about PND but about post traumatic trauma and whether this is presenting in a physical sense for you? Having said that, your BP could be the result of PE. As you quite rightly say, it is an acute condition but it can trigger longer term or even chronic conditions so therefore should not be ruled out.

5 months post delivery is not really a long time in terms of your physical recovery.
I think everyone here would agree the emotional scars, the ones you cant see, are the hardest to deal with and take the longest time to heal from.

Dont be hard on yourself, you are doing all the right things in seeking the right answers to your questions, whilst juggling your recovering health with a newborn baby.

I hope this helps but do let us know if we can offer you any more support.

Best Wishes
Liz

Thanks for replying Liz, I really appreciate it.

In terms of my machine yes it is clinically validated, it was also checked simultaneously by the consultant with a t-tube (?) and got the same readings, he seemed to think therefore they were accurate but nothing was said about the arrythmia you describe so I don't know about that. When I've had my BP taken manually it does seem to fluctuate on that too, but obviously I'm not able to take that at home so who knows. Would it show up on an ECG? The ones I have had have been normal or a sinus tachycardia which has calmed down now I'm on a beta blocker.

The labile BP seemed to start just before I had my baby - as a high risk (because of my existing BP) pregnancy I had my urine/BP checked every week during my pregnancy and it stayed exactly the same until week 39. Then it went up and I had ++ protein, was monitored for 24hours, BP was up and down in that time and protein just over the PE limit so I was induced. I had Martha on her due date, and my BP was up and down (despite meds) for the next 4 days until I woke up with major jerking of my limbs, so they put me on an arterial line thinking I had severe PE. I remember them saying in the HDU that they thought the arterial line BP must be wrong as it was so variable - but then they said it couldn't be. It was literally jumping all over the place every few seconds but I think calmed down eventually after a lot of drugs!

I've only been taking my BP every other day as asked by the consultant, and interestingly it seems a bit more stable and a little lower. Still a bit high and variable but not nearly as much as it was, although the diastolic one in particular can seem to vary 30 points a day, not sure how usual that is. Interestingly I am now seeing one of the consultants on the list you sent, (I'm in the NW), PL. I actually saw him 5 years ago when I was first diagnosed with high BP, he was very thorough and I had so many checks (including a heart scan) but wasn't put on meds at that time. He has been very clear that I def did have severe PE/eclampsia, whereas the hospital I gave birth at weren't in the end, they said as the protein in my urine stopped it wasn't and that it doesn't cause long term health problems that's not what's wrong with me. Frustrating, but in any case all I'm interested in is being well and looking after my daughter! PL has reassured me though that if it's possible to get to the bottom of this he will; I'm due to see him again in 3 weeks so fingers crossed.

I know nothing about medicine but what you said about the changes in BP making me feel unwell really resonates. That's what it feels like, although as I say, I'm not a dr so I may be talking complete rubbish! It feels like when you stand up too quickly and your head swims, except I feel it through my body and head too, and sometimes I think it's related to my pulse although not always. And it is much much worse sat down and particularly lying down. Very weird and I'm sure the drs think I'm mad but it's like being on a boat inside my head, it's horrible feeling.

In terms of trauma affecting me, I suppose it's possible but I don't know...that doesn't feel like it. Bizarrely I nearly did a PHD in trauma/health relationship, so know a little how powerful things like this can be, but it just doesn't feel like that. Sure I feel affected by what happened, how could I not, it was traumatic, very! But I genuinely feel lucky to be here, and have such a happy, healthy little girl. I know that doesn't mean I'm not affected mentally/physically by what happened, but I just don't think it is that. In a way I wish it was, as I'd happily have therapy or take anti-ds if I thought it'd help. I do feel a bit fed up with this going on so long, but if it ended tomorrow I'd be overjoyed.

Gosh what an essay! Anyway, thanks so much for your reply and I hope the consultant can help me more or I just get better (either will do, although I'd rather have some answers because I don't see how we could ever have another baby without knowing really what happened this time).

Hello again!

Im glad you are seeing the specialist - thats a really good starting point!
You said the bit that resounded with you was that you feel your BP fluctuating - Im just wondering if you have had a tilt test? Normally they are doen for people with low blood pressure or postural hypotension but they are equally useful in hypertension.

During a tilt test you would lie securely on a table that moves slowly from a horizontal position to a vertical (upright) position. Electrodes (stickers) and leads will normally be attached to your chest in order to monitor your heart rate along with a cuff placed around your arm to measure your blood pressure. Your blood pressure and pulse are recorded at various points as the table changes angle and any symptoms that you experience throughout the test are noted. The length of time the test will take depends on when, or if, you experience a spike or drop in your blood pressure or heart rate. Some people will demonstrate this within the first few minutes. Others may complete the test without any reactions.

It would be worth checking out any other rythm changes if you have previously had sinus tachycardia. Again depending on the machine you use, even ST can effect a BP reading. If there is any question then perhaps a 24 hour ECG might be useful or borrow a machine which has the PAD technology in it. This can identify if there is a change in rhythm noted.

Best wishes
Liz

Thanks Liz, I can reply quickly as Martha is having her first ever long lunch time sleep!

Not had a tilt test, sounds like it might be useful though, will definitely ask the consultant about it. I have had one 24 ECG which was normal and only showed a few ectopic beats but that was at old hosp, I know the new consultant would like to do another to see if it can be captured this time. I think he wants a kidney MRI too but not had an appt through. I'm just hoping it'll be sorted before she starts school

Best go as having said all of that she's now awake!

I thought I'd come back and update this as a lot has happened.

THankfully, 6 months later, I seem to be a lot better. My new consultant is brilliant, he has helped, listened and (fingers crossed!) seems to be getting me better. My first hospital kept telling me PE was an acute illness, I seemed to be getting better so hopefully it would continue, yes my BP was a bit high but then it does vary over the course of a day...etc etc

However, I knew I wasn't right and just wished I'd pushed it further, sooner. Although it has taken a specialist to see that.

For some reason or another my BP and heart rhythm has changed since I had Martha, and when my BP is high I feel really unwell. I know it sounds odd but I do, and this kept happening before I even knew it was high (had no monitor at home and so thought it was acutally under control). The new consultant seems unsuprised by this but I didn't think it was possible. Anyway, as I posted before even though my BP was lower and heart rate stabilised after new medication and my last hospital stay, I still felt very dizzy and odd. I saw the consultant again a few weeks ago and he thought it might be due to the drugs I was on (again I was told at the last hospital this was not possible). So he gradually changed two of my meds, leaving me on the beta blocker and the difference is amazing. I still feel a bit weird at times, but nothing like I was. My ferritin levels were also low and therefore I'm also back on iron tablets, but I don't think that's been a major factor.

I must say I do feel very sad that the first 6 months of my daughter's life have been spent so unwell, but I'm so so grateful things seem to be improving. I do still have a lot of questions though - why do I have these problems so young? Why has my BP and heart rhythm changed? Why did my BP keep going out of control? - But I will try to talk to the consultant at my next appt.

Liz, can I ask do you know what a fourth sound is in relation to my heart? Apparently when I first started seeing my new dr I had an audible one, but this has now gone. I also have a "very soft mid systolic murmur". I have no idea what either of these means!!

Hi Marthas mummy,

Im glad you are feeling better & more in control. Well done you for pushing the situation.

From a medical view point, yours is a really interesting question although I am certain the experience of it is very different.

So to answer your questions...a fourth heart beat generally occurs when the heart has been under alot of strain. In a normal adult heart beat what you should hear is a sort of doof doof sound. It is written as I + II + 0.

So these are the first 2 heart beat sounds where the top half of you heart (the atria) are squeezing blood into the pumping chambers of your heart (the ventricles), which then pumps the blood around your body.

A third heart beat is usually referred to as a murmer. For the majority of people this is something they have been born with and can live perfectly well with it. It often comes as a huge suprize when a doctor says something like 'so how long have you had your murmer'?
The sound comes from a whooshing of blood usually through a heart valve.
This would be written as I + II + III

A fourth heart sound is quite rare and should absolutley be subject to further investigation by a specialist like a cardiologist. It can be a sign that the hearts pumping chamber (the left ventricle) is under strain. It would be written as I + II + III + IV

All this could mean that your blood pressure is being effected but is also most likely not being monitored correctly.

All digital blood pressure monitors work by measuring the vibrations of the artery beneath the cuff as it deflates & the program inside the machine turns these vibrations into a number – this is your blood pressure. However, many people have abnormal rhythms of their heart. The extra fluttering from the hearts rhythm can be picked up by your digital monitor & interpreted as a blood pressure reading. This often presents as fluctuating readings even within a few minutes or error reading occurs.

As I suspect this might be an issue for you, it is important to either have your blood pressure checked manually (using the pump up & listen method) or by using a monitor that has specific technology built in to take into account any underlying abnormal rhythm.

This technology is called PAD or ‘Pulse Arrhythmia Detection’ and can recognise the difference between the vibration of arrhythmia and that of a 'proper' heart beat.

Many GPs still do not have this technology as it is relatively new and is therefore very possible your BP has not been correctly identified and consequently incorrectly managed.
Many people are being prescribed BP medication when actually the problem could stem from a rythm change hence they dont feel like they are getting better.

I can email you a list of clinically validated monitors which do have this technology and are available to buy from around £30 if you would like?

I hope this helps, but of you would like more specific info and in confidence you can call me on 0845 241 0989 Mon-Fri 11-3pm

Best Wishes
Liz

I thought I would come back and update this as a lot has happened, and it's getting on for a year since I had my baby and all the trouble started.

I've had continuing problems, many quite vague - tiredness, muscle weakness, headache (I've had a headache for 10 months now and it's really getting on my nerves) and dizziness. Some of this was improved when it was found out I was severely anaemic, my cardiologist wasn't interested last time I saw him and fobbed me off really. I asked for a second opinion and had a load of tests done but again told they were unlikely to find anything.

Anyway, by chance my cardiologist checked my aldosterone and renin levels from Oct (never looked at until now) and found a significant abnormality - aldosterone high and renin virtually none existent. They now think it's possible I have conn's syndrome, one of the few causes of secondary hypertension and are all very interested again..

I'm pretty gutted it has taken so long to get this far, especially as the diagnostic process is so long. I've got to be on different meds for 4 weeks before I can have the next test, and even then if it's positive it'll still probably be a long process after that. I've got my 30th birthday coming up in a couple of weeks, plus my daughter's 1st birthday and it is so upsetting I've still not recovered. I suppose I need to hold on to the fact that we seem to be getting closer though, and the fact that this explains so much if I do have it - very difficult to control blood pressure at a young age. Just wish this had been picked up 6 years ago!

Hi Mathas mummy,

Thank you for the update.
I am really glad you stuck to your instinct telling you something was wrong. Conns is a rare condition - I have some more info about it if you would like me to email it to you?

The past months have been really tough, but hopefully now with a diagnosis & correct treatment for Conns you will feel like the 'old' you.

Best Wishes
Liz

Thanks Liz, I just so hope this is it, it's been a long time coming!

If you have any info on Conn's it would be great to have it, do I need to send you my email address or can you do it through this site?
I've read a little on line and it does really fit in a lot of ways with what I've experienced, even things I've never thought to mention to drs before - e.g. weeing all the time. Just thought I had a weak bladder as def don't have diabetes.

Fingers crossed anyway, consultant says 50% of people who have the next test have it, so I suppose there is still a good chance I don't, but aldosterone-renin ration was 3000-1 so I'm praying that because that is so high it means it's likely I do have it.

Hi Marthas Mummy,

Ive emailed you the fact sheet I have - I hope it helps but if you have any questions you know where I am! Dont forget you can phone me on 0845 241 0989 if you want to talk it through.

Best Wishes
Liz