tykesammy

[tykesammy]

Hi all, it has been a while since I posted. About my 7 years with trying one blood pressure medication, after another, and trust me I have been on them all. I also have to remind you folks that I have been diagnosed as being BP med intolerant, by a London specialist.

So when I had no help from my local doctor's, who thought I was either a nutcase, or just a different patient. I was then transferred to my local hospital endocrinology unit, where I had every test going, and all came back okay. So the head of that department, told me, and get this lol. That she thought, I was either not taking the meds that she prescribed, or that I needed CBT to tolerate the side effects. OMG I was absolutely livid. Did she really think I had wasted 6-7 years of my life for nothing.

I asked to be referred to The Bristol Heart Institute, who I will say have been really amazing, and very patient with me. But alas, they too have given it their best shot as in trying all these medications again. Too no avail I am afraid, I personally think think there is something in my make-up, or body that simply cannot cope with what these vile drugs do to me. I don't want anyone to run away with the notion that I am just being difficult. There is nothing I would like more than, like my husband ----

who can take a pill everyday to control my BP, and as I said earlier the last 7 years has had a very bad effect on my mental health.

The effect's that I have endured from these godawful drugs, have been such, that I truly could not cope everyday with feeling like how they make me feel. TRUST ME.

So now if I survive long enough, I am looking at Renal Denervation.

Thanks all for listening, but I know I am not the only one out there that suffer's with the same Issue's. x

[Madlegs1]

I presume you have tried all the non medication solutions?

No salt, exercise, hydration and diet?

[SeaDog100]

Hi tykesammy. I can completely relate. I was diagnosed over 20 years ago in my late twenties. I am intolerant of many blood pressure medications and the side effects have been horrendous, often debilitating. There have been years when I’ve just stopped taking medication altogether. When you find a doctor who listens and tells you you’re not alone, rather than treating you as though you’re just being difficult, it makes such a huge difference even if they don’t have the answers. Doctors are often doubly stumped by me as they can’t find a cause for my HBP, so they can’t give me the usual advice etc. I seem to be having some success with diuretics now. I have had some unpleasant side effects, but these seem to be easing up and aren’t as debilitating as previous medications. I’m keeping my fingers crossed that I’ll be able to tolerate them for the foreseeable as usually any apparent tolerance doesn’t last. I hope you find some answers soon. I’m sure your post will help a lot of people in a similar situation.

[tykesammy in reply to SeaDog100]

Hi, yes that's an odd thing, I too can tolerate a diuretic, I am on Bendroflumethiazide 2.5 mg.

[Cyclamenfan in reply to tykesammy]

Unfortunately I had a terrible reaction to that, severe hives all over, could only bear to sit down on ice packs. Very glad you are ok.

[happyrosie1]

you may be familiar, tykesammy, with the website of Blood Pressure UK, the specialist charity.

Whilst you won’t like their take on medication, you might find something helpful there.

[tykesammy in reply to happyrosie1]

Hi happy rosie1. Been there and done that one.

[29METAL]

HI Tykesammy I can identify 100% with what you are experiencing but unfortunatley dont have any advise for you I was able to get of medication completely but we are all different . I tried 3 different meds and all 3 were a nightmare I had shakes anxiety light head fast heart rate lack of interest in anything and the anxiety fuelled higher BP when I came of the meds all stopped and like you the doctors dont understand and in 90% of cases are not intelligent enough to caring enough to be doctors its just a root to big money status and early retirement .But there is one guy on youtube he is a cardiologist who goes under the name the York Cardiologist he is a fantastic doctor and I know he does privite consultations . He has a video on youtube where he talks about people who can't tolerate BP meds it would be worth looking at his channel and if you cant afford it contact him for a consultation if you can't find it let me know and I will get you more details for you God Bless

[tykesammy in reply to 29METAL]

Hi 29METAL. I saw a professor Lobo in London, who diagnosed me with BP drug intolerances, and he put me forward for Renal denervation, but at the time it was a trial, their were going to be 25 of us, but what he didn't tell me at the time was that, half would get placebo treatment, and the other half the real thing. Also we would not have been informed for 1 year, so I declined. But here I am still on this merry-go-round of a nightmare. I have exhausted all of the range of BP meds, and as we speak they have given me some oral liquid losartan, to be honest I really don't think this is going to do it, altho I am sticking with it for a while. I have been on losartan tablets before and had to stop them. Thanks for Info.

[MrsP70]

my story too, I have tried nine bp meds I also can’t tolerate at least three antibiotics .

The bp med I an on now doesn’t suit me but the side effect is breathlessness Inonly continue with it because I am frightened of having a stroke .

[tykesammy in reply to MrsP70]

Hi MrsP70. That is my biggest fear, every single day. And for me who suffers from anxiety/depression, I believe it makes my bp worse.

[MrsP70 in reply to tykesammy]

I am frightened of ever going in a nursing home unable to speak and they will give me stuff I can’t tolerate…rather have a heart attack than a stroke. On a brighter note maybe they will come up with something one day to sort us out.

[tykesammy in reply to MrsP70]

I am just looking up Renal denervation, and what it costs. I simply cannot live with bad side effects of bp meds. Have you always had HBP?

[MrsP70 in reply to tykesammy]

Hi , only had Bp for the past 10 to 15 years , I can’t remember and could you tell me what Renal Denervation is

[Quilting4me]

I am the same, I stopped my bp meds last May after being told I was terminal for my ovarian cancer. My bp is still in the 180s but stopped doing checks. All I’m taking is Indapamide, as find it helps my arthritis. I also went the endocrine route and they didn’t find out why I was intolerant to medication as well as chemotherapy. The drugs made me wobbly and couldn’t think straight.

Had my CT scan in January, and got the news last week that my tumour had shrunk, I believe in prayer, and living life to the fullest.

[SAJ55]

I'm in a similar situation. But I want to warn everyone here. I'm now in my early 60s and have been prescribed various BP drugs Ramipril, Losartan, Amlodopine, etc. since 2012 but cannot cope with the side effects so I stopped taking the Calcium Channel blockers in the end but kept on the betablocker, Atenolol which I seem to tolerate so far. I stopped taking mydaily BP too as the cuff really hurts when my BP is high - which is most of the time. Well, I was very stressed one week and one morning I woke up and there was something wrong with the vision in my right eye. So I made an emergency appointment with Specsavers who told me that I had had a bleed on my retina - an R V O - retinal vein occlusion. They referred me to the hospital and I was seen within 2 weeks - fair play as they are inundated at my local eye clinic.

They told me that it was probably caused by my high blood pressure and I needed to get new medication from my GP. I saw the nurse who was so shocked at my BP she sent me straight to A&E worried that I might have a stroke. Well I had been told that many times and sent to A&E a few times before, and warned about a heart attack (common in my family) and about organ failure. But nobody mentioned that I could go blind - as the eye clinic warned that if it happens in one eye it is likely to happen in your other eye too. This is very frightening to me, more frightening than the heart attack to be honest, though a stroke would be just as frightening if I survived it as MrsP70 says.

So I am now on Doxasosin and Atenolol. Still have bad side effects but got to put up with them now as there are no other medications to try apart from duiretics, and I don't want to damage my other eye. I am now receiving injections into my eyeball every 8 weeks to stop new weak blood vessels growing to replace the blocked one which bleed easily. I dread them as I am a big baby but they do help my vision so I am so grateful they are available. But it seems like I have to have them for the rest of my life.

I just wish there was a more natural way to reduce my BP. I have tried breathing exercises, water, walking more, TMG daily and Magnesium Taurate and Potassium (Dr did say I was low) but my body just seems to resist everything.

Sorry for such a depressing post but just wanted to warn about how badly it can affect the eyes which was not mentioned to me. I just really hope Tykesammy you can find a solution to your high BP.

[Smbenson]

Have you tried natural remedies such as organic beetroot juice it worked for me?. But there are others out there