Medical BP conundrum (because having dodgy lungs isn’t enough 😅)

[EmmaF91]

So just got out of hospital but thought I’d post here to see if anyone has ever had anything similar cause I had everyone stumped 😂. Now it’s not just my lungs confusing everyone 😅. Has anyone very suffered from low blood pressure solely when sitting with feet hanging/on the floor?

Severe asthma attack Thursday basically bought on by slow decline of control since stopping biological injection (mepo - Dec 18). Classed as life-threatening due to PF and treated with nebs (15mg salb and 2x atro (3hrs apart)) and 100 hydro by ambo crew before starting journey to hosp (40+ mins away but had improved so no blue lights needed). These are all drugs I have had multiple times with only the ‘normal’ side effects.

10-20 mins into the journey I’m sat in chair (not trolley) and start feeling odd - spacey, dizzy, nauseous, clammy and sweaty. My breathing however feels ok and I had been having convos with the crew at normal speed. They can’t take BP as their monitor doesn’t tend to work when driving (dodgy roads + old monitors awaiting replacement), sats are still ok (I compensate well) however I have bilateral radial wrist pulse weakness, which combined with the symptoms of shock they deduce low blood pressure, cue legs being stuck up on the trolley which helps but they can’t figure out cause (asthma fine, I’m not particularly stressed, no blood loss/period issues etc etc). 10 mins like that knees hurt and feeling better so back to feet on floor. 10 mins later it all happens again, repeat the process, when it happens the 3 time the transfer me to trolley when we are at traffic lights.

Rapids I test it out again cause they want to transfer me to chairs. It happens again so feet go back up to trolley and due to needing another neb anyway I get to keep the trolley. Only treatment on here are salb/1 atrovent nebs (atrovent 4hrs exactly since last 😅). On obs I find it very weird to have a BP at basically 120/80 on the trolley cause usually it’s higher at 140/90+ (ambo guys had me at 157/103 at one point prior to leaving my place)

Transferred to majors then AMU and get given a mag bag (over 2 hrs so a very slow rate!), get a little shocky whilst laying but not terrible and calms down quite quickly (BP 100/70ish). I also get an extra 40mg pred at 10 pm (I was not impressed as I got 0 sleep 😒). Spend most the night sitting cross legged or lying down and feel fine. On obs at 2/6 am my BP is 140/90+ normal for me in this situation.

Next morning feeling ok, sit on chair for breakfast and after about 20 mins it starts all over again. My BP now 110/70ish, so they do a orthostatic blood pressure test (only sit to stand) which comes back negative (BP 140/90ish standing like when lying down). Now everyone’s stumped cause I only feel shocky when seated with feet hanging (ie cross legged on bed is fine). She decide to see how it goes.

Slowly improved during my time I but usually at the 20-30 min of sitting I have to do leg exercises, stand up and walk about or cross my legs which stops the issue. During all this when when legs were hanging my calves felt heavy, achy and feet felt cold to touch (I think 😅) but no colour change or swelling.

I got home today and it’s now got to the point I can last 1 hourish of sitting feet down until I get symptoms of low BP.

Cardiovascular wise I have respiratory sinus arrhythmia and usually run sinus tachy both usually when my asthmas bad.

So has anyone else ever had anything similar? It’s literally only there when sat with both feet hanging 😅.

[Shellc]

Not a clue but hope your keeping well hydrated

[EmmaF91 Community Ambassador in reply to Shellc]

Yeah I have been! Lots of water/squash/fruit juice/fizzy esp as nebs make me thirsty anyway 😅

As I said it has confused everyone. It’s like delayed orthostatic hypotension however the ‘test’ was negative and it only happens sitting 😅. My principles/bosses (osteopath) “stab in the dark” was maybe the change of lumbar lordosis was putting pressure on either my external iliac arteries or abdominal aorta (esp where it passes through the diaphragm) tho even that was a complete guess and not something we’ve collectively ever come across 😅. The docs offered no idea as to cause just a ‘solution’ to the shock (move position 😂)

[Wheezycat]

I am so sorry you have had such a rough time again! I know near to nothing about biologicals, so this may sound like a stupid question, but is there any other version you could try, other than the one that was stopped?

[EmmaF91 Community Ambassador in reply to Wheezycat]

Thanks.

I’m waiting for my new specialist hospital to get prescribing powers for benralizumab injections (a new biological). It’s only just been approved by NICE and they think I’ll get access to it around May. Until then it’s just about managing the problem with a&e treatment. I have fortnightly AN appts at my local where we’re monitoring everything (spiro/FeNO/ACT) but until then it’s is a case of dealing with it as and when it crops back up to hospital levels.

I’m hoping that Ben will work for me. Speaking to people who were in the trial and had the same issues with mepo I did, Ben has been brilliant for them - no asthma, no real side effects!

[Wheezycat in reply to EmmaF91]

Fingers crossed! And toes! Regarding weird bp, no I have had no such weird experience. My only uncomfortable experience with bp was when I had haemorrhaged lots of years ago, and my head swam if the nurses tried to raise the top end of my bed. But with extra blood that passed. I hope you don’t have yours again!

[Hidden in reply to EmmaF91]

Fizzy drinks don't quench my thirst, and I'm not sure it might make my BP worse.

[Hidden]

My sympathies. I do have blood pressure which is naturally at the low end of the spectrum - and can suddenly dip - but that is almost certainly connected to the fact that I have Joint Hypermobility Syndrome. Which raises an interesting point: there’s no chance you have that condition is there - even very mildly?

[EmmaF91 Community Ambassador in reply to Hidden]

Hi

Unofficially I do have hypermobility syndrome (being an ex-gymnast and all). Where on the spectrum I fall I wouldn’t know but I do get 9/9 on the Beighton score, plus get multiple joint pains and poor proprioception etc etc. However the only time in my life I ever get low BP is during the first couple of days of my period (they think it’s a shock response to the pain but haven’t really investigated it). I’ve always been that way (sick/dizzy/faint/sweats) from my first period and usually wears off after the first couple of days (my BP usually runs between normal and high). Tranexamic and mefanamic acid helps, however they affect my breathing so I’m going to be trying cerelle. TBH I wouldn’t know how to go about getting it properly diagnosed or if there’s any point at this stage 😅.

[Hidden in reply to EmmaF91]

The fact that you were a gymnast is irrelevant really🙂. It’s a genetic mutation that causes the syndrome and in many ways it’s not really an asset to have it for gymnastics (same is true for ballet) because of the problems it can cause (more susceptible to injury).

But POTS is a known issue for those with JHS. I have a feeling there was also some research being done on whether there was any connection with lung performance as well - which you might want to look into. There is an EDS (which JHS falls under) forum on HealthUnlocked. You might want to ask your question there as well. Someone there may have an answer:-).

[EmmaF91 Community Ambassador in reply to Hidden]

Nah - I just meant that most competitive gymnasts have an element of JHS cause many are naturally flexible before training (ie I have always been able to do the splits... even now 😂). Its helpful in some aspects of gym, but did also mean I had to do lots of core strengthening to combat the flexiblity issues. And yes I got a lot of injuries (usually ligament 🤦‍♀️). I have a friend (we were gymnasts together) who has EDS (vascular) so I usually compare myself against her extreme 😅🙈. If it doesn’t calm itself down I’ll look into it a bit more. Thanks tho for the idea x

[Hidden in reply to EmmaF91]

The major problem with flexibility: it’s great having it, so long as you have the strength to control it. For JHS sufferers it’s an uphill battle getting the strength.

[Yatzy]

So sorry to hear you’re suffering again, Emma.

I can’t help in any other way, but wishing you well with hope your problems are identified very soon.

Penny xx

[Shellc]

Emma have u ever done an elimination diet to see if Gouda affect u , I know I’ve had to cut out all juices and fizzy even if it’s sugar free

[EmmaF91 Community Ambassador in reply to Shellc]

Erm... Gouda meaning food (not just cheese 😅)?

I have tried cutting things out, currently trying to avoid squash cause of the sulphates. I already avoid a lot of things (eggs - allergy, dairy, anything alcoholic etc). Have also eliminated other things in the past to no real effect (ie bread/pasta etc, fizzy, chocolate).

[Cumfevan]

Just a thought: just because SpO2 is ok (I compensate really well too 😉 but I've had an experience of sat monitor & pulse @112 so ok but cardiac monitor showed heart rate 146 dropped to 55 in<5min don't remember that amb trip into a&e !) doesn't always mean the brain is getting all the O2 it needs in a severe respiratory problem i.e.: severe asthma attack &/or anaphylaxis - so maybe the low BP shock s/s was from that?!? 🤔

Hope you are starting to feel a bit better.

[Hidden]

Emma, can I suggest you check up on POTS. I’m pretty certain that I’ve seen it somewhere that POTS sufferers can experience dizzy spells, fainting etc when menstruation occurs. It’s not a problem I ever had (or not that I can recall) but then my periods were mostly light and never caused much in the way of problems.

[EmmaF91 Community Ambassador]

Not sure if anyone is interested but I think (after a year) that I’ve FINALLY figured it out 😂😂. I’m 99% sure I go like this (because it still happens) as a side effect of Ipratropium bromide (atrovent) nebules 😅😂😂. Para sat night/sun morning commented on how huge my pupils were (post atro neb) which of course got me thinking and yes! All these symptoms (low BP, nausea, dizziness, enlarged pupils etc etc) are all known (all be it rare) side effects 🙈😂. And the atro at home = issues during journey, atro as morning med = issues at breakfast... it all makes sense!!! One mystery solved ☺️ And if anyone else gets similar its worth getting it checked out or considering this as the issue!