andreak

My daughter is 5 weeks pregnant following a miscarriage last year

She has dyautonomia, CRPS and POTS. Her BP and heart rate run high, around 120bmp and 180/110 on average but the average hides the fact they can be highly unstable

Her BP can spike in the 230/160s then plummet 3 or 4 times a day to 50/40

She has tried lots of medications, CBT and therapies without success

Last year the nurse who discharged following the miscarriage said that until her BP was stabilised there was a very real risk of interrupting the blood supply to the baby and basically starving it of oxygen and believes this may be the caused of the missed miscarriage

The pregnancy was unplanned and came as a surprise and she was rushed into hospital with pains 2 days ago, a suspected kidney infection and mild bleeding but it is too early to detect a heart beat hence having to go back next week for a repeat scan

She was too frightened to ask about the implications for the progression of a healthy pregnancy and I was wondering if anyone had any advice or knew of similar problems

There is much about high blood pressure in later pregnancy but seems to be very little of the dangers of unstable blood pressure, especially one which can change rapidly within minutes with no change in activity levels

If anyone can offer any advice I would be grateful

My daughter is 20 and was diagnosed with POTS three years ago

She has had autonomic tests in London and we have chased up an appointment to discuss these as she is really struggling at the moment

The Autonomic Unit at RHNN explained there may be medication she can have to help but I was wondering what we should expect given that she has a very high baseline heart rate during the day which never usually drops below 100bpm linked to generally raised BP on the very upper limit of normal when resting. When exercising gently this may increase to 210bpm within a minute or so.

From what I understand midodrine decreases BP by reducing HR, SSRIS such as sertraline can increase tachycardia, fludrocortisone is steroidal and she worries about weight gain with this

That leaves beta blockers and she has previously tried propranolol albeit at a low dosage with no success.

The only other thing is Clonidine which reduces heart rate but in reducing HR would this increase BP ?

I was wondering if anyone else has a high baseline heart rate and blood pressure and what, if anything, you have found helpful

As the hospital is 200 miles from home its not easy for them to monitor and change dosage levels so I was wondering how the medications are managed and how the hospital will arrive at the suitable dosage and monitor its effectiveness

As the appointment is liekly to be very brief I feel it best if we can go armed with as much information and advice as possible

Thanks

Andrea

My daughter is 19 and has POTS. From the age of 16 she had up to 25 faints a day which were mostly convulsive and would see her rambling during them

They only happen infrequently now although symptoms are probably worse than when she did faint

Anyway we live in the UK and shes about to start University. Socially drinkings a big thing amongst her peers but she doesnt go out often

Last night she went out and had the same as her usual limit steering clear of anything thats a trigger. She had eaten and drunk plenty of fluid before.

I spoke to her to arrange a lift home and she was fine but within 30 minutes she rang disorientated and slurring her words with no idea where she even was. Luckily I found her

Having spoken to her friends they describe she seemed to collapse twice. On the second occasion a doorman came and threw her out into the street. When I got there she was confused, irrational and was rambling.

Now I do understand this could be alcohol induced. She knows my opinion on drinking with POTS but for the majority of the time is fine

I dont understand the slurring confusion and irrational behaviour. It scares the life out of me.

I dont get how one night can be fine and another has her like this

Has anyone else experienced something like this. I need to help but I dont know where to start :/

Has anyone experienced highly unstable blood pressure, by this I mean BP that can fluctuate from very high to low within minutes and changes constantly throughout the day even if in the same position. My daughter has this happening atm. Her heart rate also reacts similarly but appaently

My daughter is 19 and was diagnosed with POTS two years ago but has been feeling progressively worse

Just completed 3 days of autonomic testing which showed this highly unstable BP which doesnt seem to be too common

There are other problems with tremors, problems emptying bladder, migraines etc and she also has Complex Regional Pain Syndrom.

I have been diagnosed with the High BP type of POTS and put on Propranolol 10mg twice daily, morning and afternoon to cover waking hours as these are the times when my BP is really high

I have been taking the meds for a few days now and noticed that the tightening in my chest is becomming worse to the point at which I feel I am struggling for breath at times

My GP is clueless when it comes to POTS and the nurse looking after my care at hospital is currently on leave so I need a little advice

Should I persevere and see if the symptoms settle the longer I use the medication or should I reduce and stop taking it altogether and see if the symptoms settle ??

Has anyone else had similar problems

I have my first appointment with Professor Mathias's clinic in London on the 28th but was hoping to have a repeat 24hr BP trace before then to see if the medication is effective

Thanks in advance

Alison x

A couple of months ago my daughter got a letter from the Autonomic Unit in London to say she was on a waiting list to see Professor Mathias but it could be a lengthy process

Does anyone know the timescales involved and what to expect at the first appointment

She has been diagnosed with POTS and EDS at Sheffield but is really struggling with high blood pressure at the moment with her readings varying from 186/144 to 70/50 throughout the day

Sheffield dont see this as a concern even though the daytime average is 144/116 so I'd really like her to have a second opinion as soon as possible as she is currently unmedicated other than water and salt

Coincidentally how do people feel about increasing salt intake with high blood pressure

Any advice

Andrea x

POTS is looked after under a Cardiology consultant and I am seen by his nurse practitioner who has a specialism in POTS. My GP surgery had raised concerns that my blood pressure readings had been creeping gradually higher since the onset of POTS. Back in the early days I could faint 25 times a day but that doesnt happen now and the BP readings have risen from 120/80 to 144/121 at the last visit so he asked that I mention it at my POTS appointment

The person I saw said the results werent a concern as may have been a one off reading during the day but I have generally been feeling rubbish lately so I mentioned this and also that my GP didnt want to prescribe medication with such a high BP

It was her who organised for my GP surgery to carry out the 24hr monitor

I am wondering if I have the hyperadrenic form of POTS with these high readings, plus my pain responses are based on fight or flight and I do tend to be overly sensitive and hyper needing tobe kept occupied one minute then exhaused and down the next and reading posts it seems this can be a pattern in this type

Any advice would be welcome as I dont see the nurse at the hospital for two months

Alison x

Im 18 and had POTS for around three years now. It came about after several years suffering with the chronic pain condition CRPS

I have just had a 24hr blood pressure monitor as although my POTS nurse isnt too worried about my BP my GP has raised concerns when issuing CRPS medication

The average readings I have are Daytime 168/115, overnight 108/70 and a 24hr average of 148/108

Having CRPS which is an autonomic problem Im well aware that things can return to normal whilst asleep.... for me dystonias resolve when asleep and resurface the minute I am awake so I would expect to have normal readings during sleep

Has anyone else with POTS had the 24hr monitor and how were their readings

I have requested the hourly breakdown as I was to demonstrate to my GP how things can fluctuate widely dependant on what I am doing and whether or not I have changed posture etc

The other thing I dont have at the moment is the heart rate readings but I do know in the day they can be extremely high, to the point at which exercise machines in my local gym switch off and give health warnings

If anyone can look at the readings and tell me what they mean I would be grateful as I have a two month wait to see my consultant

Many thanks

Alison

I find your reply really interesting

My daughter is 18 and was diagnosed with POTS around 18 months ago along with Ehlers Danlos. She also has Complex Regional Pain Syndrome

Because of the pain and symptoms worsening aroung the time of menstruation she was placed on a combined pill, the mini pill having not agreed with her

The clinic who prescribe the pill take her blood pressure and we have found over the past couple of years this has risen from normal 114/80 steadily in the top reading to 134/87 after one year and was 144/121 at the last reading a couple of weeks ago

Her cardiologist has written to the clinic stating that she may remain on the combined pill as it helps with symptoms but I do worry that the readings are increasing

When the clinic take the readings it is usually straight away after standing and walking into the office and they then retake a couple more times and the reading increases slightly or stays the same. For my daughter this is normal POTS behaviour

I was wondering of those of you with hypertension what are your readings and do you notice these come down

We have access only to a limited number of tests as we live in the UK and the NHS will not fund extensive tests beyond diagnosis

We have a further appointment late next week at which we will discuss matters. The only medication she takes atm is Sertraline for the POTS and also oral Ketamine for pain - would either of these cause an increase in BP

In addition does anyone use one of the combined pills designed to stop periods and have you noticed any increased problems with POTS symptoms

Thanks

I was diagnosed with POTS around three years ago and also have Ehlers Danlos and Complex Regional Pain Syndrome

Im an 18 year old female with autonomic problems for the last 6/7 years

Three years ago I went to my family planning clinic as I was finding monthly periods were making the CRPS and POTS symptoms worse and they prescribed Microgynon 30, the combined pill

I was allowed to take this three months straight with a week break after that, thus cutting down on the monthly downturns in my health

Back in April 2010 my bp at clinic was 114/80. Over the past three years this has risen steadily and my last reading was 144/121

I am having blinding migraines, feeling sick and dizzy all of the time and generally unwell. My family planning think this is because of the pill but my cardiologist has given them a letter saying I can stay on the combined pill as my BP fluctuates

The problem is FP do not understand POTS and my cardios do not understand complex regional pain

I was placed on a single hormone pill for a period of six months but my symptoms worsened

I have a couple of questions:

1. How do other people find their blood pressure behaves. To my mind FP are taking the reading after I have stood and walked into the clinic room. At that point my BP will fall and then suddenly increase to try and catch up (or thats the way I see how POTS works). Do you think a high reading in the surgery will necessarily indicate a health problem that needs medicating as I worry that if the GP places me on medication it will exacerbate the times when the BP falls low

2. I was placed on sertraline but I am finding atm that this is making all of the symptoms worse, especially the nausea. Will this settle if I persist

3. With reagrd to contraception does anyone know of something I can take to minimise bleeding but does not have weight gain or mood problems... it seems I am very intolerant to most medications but I really do need something to keep pain at a low level. I cant risk weight gain as the CRPS and POTS often get in the ay of walking or daily exercise

I am about to start a COPE pain management programme next month and really want things to stabilise

Would it be worth asking my GP to do a 24hr BP monitor as I am still waiting to hear back from my cardios about the problems

I live in the UK and have been placed on the waiting list to see Professor Mathias but this may be towards the end of this year before I have an appointment

Any help or advice would be welcome

Thanks

Alison

My daughter received her POTS diagnosis

She has been advised to start sertraline 25mg daily

The nurse at the pots clinic advised her that she should never get pregnant on this medication as there is a high risk of the baby having birth defects

This absolutely terrified her to the point she is considering looking at alternative treatments

What have others been told about this medication and how effective are none chemical forms of therapy

Any advice would be welcome

Thanks

Andrea

Thanks everyone for the advice

We used to have a SEN statement when she was at school because she was in a wheelchair due to complications with the pain condition

The fainting started half way through a Diploma completed in years 10 and 11 and the awarding body wouldnt allow her to mix home study with the Diploma so he went with home tutoring 5 hours a week and ended up getting 3 GCSEs which was amazing as she had been out of school since year 7. The concern was that syncope affected the safety of others but she has been so ill recently we really do need to revisit this, in light of any diagnosis we receive tomorrow

With regard to borth control pills we have already discussed her coming off and will discuss this further at the hospital tomorrow. It seems that she can tolerate combined but not single hormone pills, but Alison has always been extremely sesnistive to any medications tried for the CRPS

Sara Im interested to see you also have a diagnosis of EDS. Alison has been booked in for a review at our local genetic clinic to discuss this as the Cardiologists now think given her hypermobility and extremely stretchy skin, she is a perfect candidate to have EDS hypermobility type and that the EDS was probably behind her getting the CRPS and the BP and syncope problems

Unfortunately for us it has been a long journey as Dr Wests Team at Sheffield would not take a referral to the POTS clinic until she turned 16

Hopefully tomorrow will bring more answers and I will keep you posted as to how we get on

It really helps to feel we arent alone

Thanks again

Andrea x

Hi all,

My name is Andrea and my daughter Alison is now 17

She has had a Chronic Pain condition CRPS since she was 12 and developed syncope just under two years when she was having convulsive faints anything up to 25 times a day

These have stemmed down now and she can usually managed to prevent fainting but has developed many other problems along the way

Because of her pain condition she was placed on the combined pill to stop problems with painful periods. Her bp throughout has remained slightly high at around 134/88 but at her last appointment her bottom reading hit 90 and they placed her on the mini pill cerazette

In the month she has been taking it her bp has risen to 145/101 but the clinic see no correlation between the rise and the pill

I was wondering if anyone else has experience something similar

She is now having terrible episodes most of the day which she describes as being on a permanent tilt table, with racing heart rate and feelings of sickness or being sick

Her moods are also really bad, with terrible mood swings.I have read of many of your experiences with POTS and moods being part and parcel

Obviously we do not have a diagnosis at present but our Cariologists were 99.9% certain it was POTS

The thing that confuses me is the high bp readings as I thought POTS was linked to a fall in bp on standing or activity

The hospital did 24 hr ECG, ultrasound and Tilt Table but not blood pressure monitors so the only readings are the clinic ones where Alison had walked up a couple of lights of steep stairs to get to the surgery. Would this be likely to cause an increase in bp ???

Any advice on those of you with POTS at a young age, managing college and POTS or on general contraceptive advice would be welcome

We are on a pretty steep learning curve on this so could use any help

Thanks

Andrea x