In a tricky situation, I didn`t know whether to post this in this group or heart group or glaucoma group. Maybe I will paste it to the others.
I have had high bp for years and Afib too. I had an ablation feb 2020 which worked for 4 years. It was set off again following the shingles jab in Mar this year and is now persistent. I am on Rivaoxiban.
However, I have had very low bp and heart rate on and off since march and was so low at times I took the decision to stop some meds such as flecainide, losartan for high bp and cut back on verapamil. I have monitored this religiously and adjusted accordingly resulting in steady, albeit still sometimes low bp and heart rate.
Now throw Glaucoma into the equation. I was only told 5 weeks ago, its just in one eye at the moment. I am on very strong eye pressure drops (trusopt). I have found out from my old ophthalmologist Simon Walker from Cheshire that I MUST not have low bp. The eyes need a plentiful blood supply to stop the progression of the glaucoma. So in a nutshell , low eye pressure but higher bp!
It`s even been suggested to try a steroid tablet Fludrocortisone to increase BP.
I am mortified to say the least. Torn between saving my heart or my eyes it seems. The doctors up here very north of Scotland are pretty useless to be honest, hence adjusting my own meds (please don`t shout at me). I haven`t even seen a cardiologist up here despite putting in a very dodgy 24 holter monitor in to them several months ago (before I adjusted my meds myself) Can`t get in touch with cardiology at Raigmore as no contact details as I have never ever seen them (moved here 2 years ago and despite being on several heart meds they never requested to see me). The gp here is in cloud cuckoo land so no point asking.
I have just ordered a AKtiia watch to monitor blood pressure through the night before resorting to anything else.
Has anyone else been in this situation and if so how did they cope?
Hope somebody has some advise. Thank you for reading.
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destiny234
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Ideally, you would put your cardiologist and ophthalmologist in a room, physically or virtually, and have them come up with a plan.
As this does not seem likely, at least try to get out of a cardiologist what is a permissible systolic and distolic ? Get the same from your ophthalmologist. If you can't get hold of the cardiologist, you're gonna have to do your own research re bp levels, which isn't a bad idea anyway even if you have one.
Then, with a high-end blood pressure machine for monitoring, tweak and or get your blood pressure medication changed and see if you can reach both goals.
This will involve some experimentation, as well as hopefully support and guidance from whoever is prescribing your blood pressure medication. If possible, you might seek out someone that specializes in blood pressure medications, but if not, you just have to work with what you got and probably a good pill cutter.
While that watch you mentioned sounds great in concept. I haven't found a watch yet that is particularly accurate measuring blood pressure passively-- either with an inflatable bladder or using optical technology.
I could be wrong on this, but the only way to know would be to test it side-by-side with a trusted device.
Omron makes some high-end blood pressure monitors and I would start there. (I tried their automatically inflating watch device and was disappointed in accuracy. )
You may not be able to monitor it throughout the evening continuously with a standard device, but I would think measuring it before bed and a few times during the night in the beginning and upon awakening should be enough.
The gold standard would be an ambulatory blood pressure monitor (ABPM) but it requires a prescription from your doctor.
Best of luck and let us know how things work out. I may be in your situation soon, myself.
I have a similar thing going on but between Surgeon and team for Ca Thyroidectomy and it's ? return now and NO cardiac specialist to give a holistic overview of whayt is best for me regards tests for Ca return ?.
After returned for tests after my 4th Ultra-Sound for Thyroid Return check. I had a CT scan with and without dye.
Then called for a Radio Active Iodine Scan in Auckland where instructions were to stop my Synthroid (Thyroxine) for 21 days and have a low iodine diet none of my salmon and fish I eat.
I queried the fact that I was on Diltiazem CCB for rapid heart AF. I'd be up at 50 plus TSH and would run the risk of a return of rapid heart rate and another stroke. Clearly a stressed heart.
I said I wanted a Cardiac Specialist amongst my triage team.
I waited and had to start the withdraw of thyroxine. 2 days without and I was already at 4.8 TSH when normal neither hypo or hyper thyroid was .6-4.2TSH.
In the end a team of thyroid specialists with my surgeon cancelled the Auckland appointments and the scan was changed to a PET scan 2 hours away instead of 4 hours away. Also it was questionable whether I had to stop thyroxine. PET scan preparation started with no food 6 hours prior.
I looked it up and followed no iodine based food day prior, no carbo hydrates or sugsar contained foods etc. I read week without thyroxine. I opted to stop day before and on day. Restart next day.
The PET scan ingfusion is made up of RA Iodine and I waited 90 minutes before scan with and without dye CT scan.
Drink plenty of water.
The Chaser infusion was sugar based.
In the end it warmed up pitioary gland. MRIed - normal and because no images of the 3 areas for thyroid return I await yet another CT scan in 6 mths without and with dye.
So question is why cant the triage team include other specialists for a HOLISTIC approach in covering other aspects in other treatment and diagnosis.
I'm all for it and so should you and you and the poster.
Suggest you ask Dr Walker to refer you to a cardiologist that he knows that can assist with your condition. He likely has treated other patients with the condition and his referral will speed the process even if travel is involved.
In the interim, try the steroid tablets. And would be good to post also in the glaucoma forum.
I've had progressive glaucoma for over 12 years and have had operations on both eyes and three different types of eye drop a day. No-one at Moorfields or anywhere has ever mentioned low blood pressure to me. Glaucoma is in my family and what I do know is that, if caught early, the majority of cases can be well controlled on just eye drops or laser treatment.
TootingBelle that’s very reassuring to hear. There is a lot about it on mr Google though plus Simon Walker mentioned it in his email . You say you’re on 3 drops , can you tell me what they are ?
Yes, I've just been looking online about bp and glaucoma and see both high and low bp can affect it. My bp can go either way but is usually in normal range. My eye drops are timolol (betablocker) monopost (a prostaglandin) and dorzolamide (Trusop) at different times of the day.
He might still be able to refer you to someone suitable. Ask him what speciality you're looking for and do some research in your area within a 200 mile radius. As Jim says, upu need to be informed proactive. I second the recommendation of the Omron BP monitors. And btw if you're in persistent AF there's no point in taking the Flecainide as far as I understand it, because it's an anti arrhythmic. So your instincts made a good call there.
Singwall thank you, I’ve made a note to look into getting an omron monitor. I don’t think my old doc mr Walker will refer me as he has not seen the glaucoma , our history is episcrilitis, scleritis, cataract x2 , yagx2 all due to relapsing polychondritis. The constant obuse to my optive nerves from the above over the last 10 plus years are the cause of the glaucoma in my case. So I can’t ask him for a referral without going to see him and I’m just not up to that journey .
Have you thought of consulting privately with a cardio or better still an EP? Consultation would cost between £150 and £300 - ask when you book appointment. I had to go private or wait a long time here in West Wales when I was diagnosed 8 years ago as our local hospital had been unable to recruit a new cardiologist for over 14 months (due to planned re-organisation that would mean a new super hospital might be built elsewhere in the area and people would have to move - still not happened and I think they have been talking about it for about 20+ years - they are still undecided between two sites for the new hospital so not likely to happen in my lifetime now - I am 81 this year)
I have glaucoma in both eyes - as did my Mother. So far of myself and my two siblings I am the only one who has got it - and got my Dad's AF too. Well I am the eldest I suppose. Luckily my BP is usually really good and rarely below 120 over 80 or thereabouts.
Once you have seen the cardio or EP privately they can put you on their NHS list for further consultations tests, scans etc. Sometimes it's the best way to go as you then get on their NHS list a little further up the scale.
Hi Seafin. It was diagnosed a glaucoma specialist Dr Leslie who comes up from Raigmore monthly and has clinics in Wick hospital. I am due to see him again next week which will be 8 weeks since last appointment. I shall bombard him with questions about this low blood pressure issue. I am not sure his level in comparison to Simon, the latter is very well respected and i was with him for 13 years. He has a website thebestsense.com
That's good that you will be seeing an opthalmologist. I also have glaucoma, and low blood pressure (as well as AF). I am taking Fludrocortisone to raise the BP . It was prescribed after an opthalmologist asked me to ask my GP to do something about the low BP (because of low blood flow to the eyes and elsewhere) so my GP referred me to an endocrinologist who prescribed it.
My opthalmologist (at Moorfields) was always concerned about the BP and did not want my diastolic to go below 60, which is more likely at night.
Seafin, we are in a very similar position then. Can you tell me how the Fludrocortisone is affecting you, any weight gain, moon face etc, what dosage and how long have you been on it?
Hi again, after some extensive research it appears that Fludrocortisone not only raises BP but also raises eye pressure so I will be questioning that next time I see my eye guy. I just thought you should know as you take it.
I have been taking it on and off since around 2011. You tend to get some water-retention especially with the higher dose (300 micrograms). I vary the dose - higher when it's hot when you can get dehydrated and your blood volume drops. Latterly I have been taking around 50-100mcg daily, particularly taking at night. When I am not taking it I trial other forms of maintaining a higher BP - including taking salt (as recommended by a cardiologist) and quite vigorous exercise like runs or squats.
well this is very interesting. I have glaucoma and have also adrenal insuffiency after tapering prednisone for GCA, my BP is always low in the evening now. I just had eye appt/glaucoma check and my visual field test has changed and need to return in 3 months to recheck it. I will be sure to ask about the low blood pressure. Thank you.
One suggestion is, what was given to me by a nurse at NZ Heart Foundation is to separate your Verma....... and take morning and your Losartan (not the best for AF) - Bisoprolol ,better at night. Bisoprolol is more cardiac specific.
The former a CCB and latter a BB both blocking meds. I take Diltiazen 120mg morning for heart rate and Bisoprolol 2.5 for BP control.
And of course PRADAXA 110 x twice my anti-co.agulate.
Start keeping a notebook and suggest that you have a 24hr Heart monitor to understand what your meds are doing.
Eyes are so precious.
I would not take steriods due to taking thyroxine for Ca Thyroidectomy.
so I emailed the lead cardiac nurse yesterday and explained the situation. I thought I would at least get a referral to another email /dept but no . This was in my mail box this morning …..
‘Thank you for your email. Unfortunately as lead nurse for cardiology I only deal with acute in patients in CCU and not out patient clinics. The primary route for you would be to visit your GP and he can refer you onwards to cardiology if deemed appropriate.Regards
Charlie Bloe ‘
So back to the useless gp I’ll have to go. Trying hard to stay positive but it seems at the end of the day , up here at least, nobody cares .
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Home blood pressure monitor.
Low BP with PAF now
Beta blockers for Glaucoma
Now prescribed Rhythmol for afib
Had an ablation,for svt, now have high BP
