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Hypertension meds have got my life on hold

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wayne08874
wayne08874

Hello everyone, I was diagnosed with hypertension in January 2017 and although the BP is now controlled, the side effects of the medication have essentially made me physically impaired.

Although I wasn't aware of any symptoms for HBP, I went to A & E as I had a pain behind my eye along with a blurring of vision - upon examination, I was found to have a BP of 250/110, a retinal haemorrhage and was immediately hospitalised. After a ten day stay the MRI, CT, Ultrasound, Echocardiogram, ECG and Renal Angiogram found nothing out of the ordinary - apart from being a little overweight, everything is A1.

Leaving hospital, I was taking Amlodopine, Doxazosin and Hydralazine - after swelling and bowel problems Amlodopine was dropped and replaced with Losartan and Lercanidipine. I also dropped salt and caffeine from my diet and very rarely had alcohol - and I've never smoked in my life. For nearly a year my daily meds were 50mg Hydralazine, 150mg Losartan, 10mg Lercanidipine and 8mg Doxazosin - BP was maintained at around 140/85. However, side effects were muscle pains, back ache, palpitations, shortness of breath, dizziness and general total lack of energy - these could come on when immobile or up and about but were generally much worse once on my feet. Walking from my car into a shop and back (maybe 200 yards) was like a cross country run - I'd collapse into my seat, pains in my limbs and struggling for breath.

Also there'd be incidents were I couldn't speak and breathe at the same time but largely, normal physical activity was out.

With my GP's permission I reduced my Doxazosin and have now successfully removed it with no increase in BP and lowered the Hydralazine to 25mg too - the side effects are now more moderate but still prevent me from the level of activity I once had.

I accept that I need to keep my BP in check but I also want my life back - I was assured in hospital that controlled BP would have no impact on my life at all but this is far from the truth.

Does anyone have any advice based on similar experience as I'm at my wits end with it?

0 likes, 32 replies

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  • wayne08874
    wayne08874

    Posted

    I will add to this that before being diagnosed with BP I had a very physical, active job so lack of exercise wasn't an issue and I've always been a fairly robust and strong person.

    One specialist suggested I might have an anxiety problem though I've never been aware of any symptoms - however at a government health assessment six months ago my BP was 207/147 - despite not feel anxious.

    I've previously been told that anxiety can't push BP that much?

    Also, when I do suffer my side effects and I'm at home I take a reading on my monitor and BP can be as low as 100/67 and heartrate 115 (nearly double).

  • chris96652
    chris96652 wayne08874

    Posted

    Unfortunately, there is no easy answer, you can keep trying different meds to see what happens, it's trial and error. There is also no such thing as a normal way of feeling on any BP meds, they all have side effects,

    most likely all produce fatigue. You may need to add a small dose of a diuretic to reduce the water volume.

    Small doses of 3-4 meds is better on side effects than a big dose of one or two. Anxiety will definitiely raise BP,

    but high BP in and of itself auto-triggers anxiety because tension headaches can build and the body senses something is wrong and starts the adrenaline ramp. Drop sugar from the diet altogether if possible, sugar raises BP and if you do, the weight will go away, it's the number one cause of excess weight,.

    I'm at 170/110 with no meds, I plan on trying a diuretic alone next, ACE's and ARB's don't work anymore for me. My renin is low already so that is most likely why. Low renin hypertension has to be treated with diuretics

    and calcium channel blockers. Walk 2.5 hours 2-3 times a week, that will usually reset the BP down to a lower level about 20 points, after the first hour the energy level goes back up.which makes the next 1.5 easier..

    Sounds like you are taking too high doses, try adding the diuretic and backing off the dose on the others.

    • wayne08874
      wayne08874 chris96652

      Posted

      Thanks for the reply Chris. Yes, I've already stopped sugar and cut back calories - in reality, the excess weight is through lack of activity since the HBP kicked off - most people wouldn't describe me as overweight.

      Regarding exercise - although I haven't tried it, I feel I'd collapse after walking 20 minutes at a slow pace based on experience since this started. Are you suggesting the dizziness, pain, shortness of breath and pounding heart would fade after a mile or so - is this what you did?

    • Tee19
      Tee19 wayne08874

      Posted

      I forgot to say. I agreed to 12.5 hctz a few times a week but I don’t use it much  it gives me awful leg cramps unless I eat bananas with it but it helps with the least side effects. I keep trying to do it without meds 
    • Tee19
      Tee19 chris96652

      Posted

      I agree with you Chris. I also dropped any sugar. I feel better without sugar as well.  There are plenty of great things to eat out there with natural sugar versus the bad sugar
  • sylvia23434
    sylvia23434 wayne08874

    Posted

    After two years of hell on BP medications similarly to what you describe. I am settled now on one diuretic  daily.  I decided that no matter what happened I would reject the others. Losarten made me swell up, as did calcium channel  blockesr and ditto with beta blockers.  The side effect were worse than the HP.  I waited for 6 weeks for the side effects of these meds to subside and then I tracked my BP with a ormron M6V home monitor which is what my GP surgery use.  My GP then decided to do an ambulatory monitor and it came out 128/89 which he was happy with.  I was eventually diagnosed with white coat syndrome after going to hospital for a test and my BP was 225/123.  I hope this helps you as I was at my wits end before.  
    • Tee19
      Tee19 sylvia23434

      Posted

      Happened to me too. Pls rd on Metoprolol Because every time I go to the doctor my blood pressure is high however when I check it at home it’s not bad at all although I have always run a bit high it’s a number it was once considered normal BP before they changed it to the ridiculous chart they go by now
    • wayne08874
      wayne08874 sylvia23434

      Posted

      Thanks for the reply Sylvia - like you and Chris suggest, maybe a diuretic is the way forward. I'm just so edgy now about the fallout from doing drastic changes - also it seems doctors are reluctant to do anything other than bring the BP down at any cost - regardless of if your life is then in tatters because of the treatment!

  • Tee19
    Tee19 wayne08874

    Posted

    Hello Wayne

    Look up my postings in the forum and what countless others have posted who’ve been given these horrible drugs. I tapered off the one they gave me and made lifestyle changes however I think I have white coat hypertension.  My doc placed me on a med that nearly destroyed my life (Metoprolol)

    I have always run a little high BP wise 

     Smart person on this website that you may come across named Mike stated your blood pressure can change many times a day and I know that as a nurse although it sounds like you had a far more serious issue given what landed you in the emergency room and hospital for an extended stay I would be very careful and make sure you discuss everything with your doctor 

    These drugs in my opinion are awful

    You can look up more info on a site called “Ask a Patient “ Where you enter the drug name and people will tell you what they’ve experienced personally with the medication it’s never ending

    I can’t believe After all these years of BP meds that they haven’t come out with something better

     To me it seems the BP meds are worse than having hypertension 

    The side effects are awful and dangerous 

    I wish I had more to offer 

    Keep reading and talk to your doctor 

    Best wishes 

    • wayne08874
      wayne08874 Tee19

      Posted

      Thanks for the reply. Yes, after reading some of the posts here I had no idea of the scale of this problem or the vast range of treaments. Fortunately, I've had a lucky life so far (I'm 48) and prior to HBP could count my adult doctor visits on one hand - but I think this has made me blindly believe that the doctor would be always right...not so sure now.

      I can't shake the feeling that I've been wrongly diagnosed - for a start the eye pain/haemorrhage - I was told there are no pain receptors behind the eye so wouldn't have even felt the bleed (two weeks later I was told I had Sinusitus which would've resulted in eye pain). Seems to be so many variables.

    • derek76
      derek76 wayne08874

      Posted

      Really they threw to many meds at you all at once and it is no wonder you had extreme side effects.

      Google for "hypertension referral centre ( the name can vary a bit)  and insist on being referred to one. They are few and far between but major hospitals have them and waiting times can be long.

      The consultant there said that cardiologists are very clever people and do things that I can't do but they don't understand hypertension as I do.

      I have had hypertension since 200 years with quite regular readings of 210/110 despite having tried a whole range of side effect causing medications.

      This is from the letter of my second consultation.about three years ago.

      " “ His blood pressure at the clinic today was 187/82. He has very labile hypertension but I wonder the reality if it is his blood pressure tends to be low but very reactive rather than predominately high certainly he seems to have had side effects on a number of antihypertensives raising the question as to whether he was in fact being over treated. To avoid complicating things we are leaving his medication as it is although if he gets symptomatic hypertension it would probably be worth reducing his losartan (from 100mg to 50mg) 

      We will arrange the Kidney MRI (and later a head MRI)   can and I look forward to hearing the results of his 24 hour ambulatory monitor.

      Going into his past in a little more detail it sounds as if he hasn’t had a lot in the way of investigations for his hypertension and I am going to arrange an MR scan to address his aneurysm but more importantly whether his renal arteries are involved in it (which might not be apparent from the surveillance ultrasounds he gets) and also to clarify a little more about his liver cysts and in particular the extent to which his kidneys may be involved”

      Now I  only take a 25 mg losartan if my BP goes off the sale. Mostly if I sit it out it comes down. It mostly tends to be high in the morning. At the moment it is 122/80 hr 66. At lunch time it was 106/67 65 but first thing this morning it was162/101 68. I had a reading yesterday morning of 177/138 71. I do have atrial fibrillation that can affect the monitor. Consultant told me to take four readings over a ten minute interval and only to believe them if three were in the same range.

      I could write a book about this it started when I was 66 and I can only say at 83 that it has not killed me yet. Fell free to ask any questions as I've been posting and reading this Forum for several years. I definitely  have white coat hypertension but there seems to be other unknown factors and triggers. At present I'm keeping note on the effect of my digestive system on my BP

       

    • wayne08874
      wayne08874 derek76

      Posted

      Thanks for the reply Derek, I'll look into the referral centres - there are two fifty miles from me.

      Interesting to read in your letter about reactive hypertension - that would fit with my experience although if the BP is a symptom of anxiety or flight or fight responses it isn't reflectled by my mental or physical state.

    • mike92384
      mike92384 derek76

      Posted

      derek76...I wish there were more doctors out there like the one you had...ones that investigate WHY high blood pressure is going on. I read somewhere...a reliable site...that doctors need to resolve what's going on in a person's body. It's because of that something that causes bp to rise. It's the body's way of reacting to something wrong (elevating the bp). If more doctors would practise this, then the need for bp medications would drop drastically!!!! 

    • derek76
      derek76

      Posted

      Sorry ! Not 200 years but since February 2000. It had been checked the previous November and was within limits. I went to my GP in the February prior to going on holiday as I had been having intermittent indigestion with a pain in the upper chest and wanted something  for it. She checked my BP and said it was 210/110 and sent me to the chest pain clinic where they had the same readings. They did an ECG and an echocardiogram that did not show anything abnormal. They said my BP was too high to do a stress ECG and prescribed Amlodipine and Atenolol and to go back in four days. Then my BP was around 168/84 and they did the stress ECG. They said I must have narrowing of the arteries and that my heart was not getting enough oxygen and that I must have angina and gave me a spray to use. I insisted it was not that type of chest pain and never had cause to use the spray and went on an active holiday to Barbados..   

      I had side effect from the tablets and pleaded for a change of medication when I got home and was given lisinopril with worse side effects and then Enalapril that brought me out on an all over rash.

      Another visit to the doctor and again BP at 210/110 and back to the hospital. This time the stress ECG led to an angiogram that showed my arteries to be clear and was told that the ECG was a false positive. I said that I had previously had chest pain in 1993 without raised BP and had been told then that I had angina and had been given nitro glycerine tablets that I had never had cause to take. My then GP had said that the diagnosis was rubbish. Double false positive said the consultant who then prescribe a diuretic, Losartan and Verapamil. I soon abandoned the diuretic as it gave me pain in the pelvic area. The other two drugs did not cause any side effects and I took them until attending the hypertension centre. Apart from that I  developed aortic stenosis and had my aortic valve replaced in 2012. As part of the tests leading up to that I has a stress echocardiogram that concerned them but another angiogram proved that also to have been a false positive.  

  • chris96652
    chris96652 wayne08874

    Posted

    Wayne, with the symptoms you are describing I would strongly suggest having a cardiologist do a doppler ultrasound of your heart to make sure it is alright and check for thickened muscle walls, if it checks out ok then I would push through the symptoms. The shortness of breath is a symptom of heart failure, but could be something else, I would get the scan before doing the extreme walking, but walking is good for heart conditions.Do you have dizziness off meds ?
    • wayne08874
      wayne08874 chris96652

      Posted

      Hello Chris, I had an echocardiogram when I was hospitalised which I think is the same as the ultrasound you've mentioned - they were indeed looking for thickened muscle but all checked out perfect.

      Prior to this no dizziness, I was working on my feet 9 hours a day doing very physical stuff - had absolutely no indication of any health issues. The reason I'm reluctant to try exercise now is because my heart is pounding in my ears (and is at double rate) at the slighest exertion - nevermind blacking out from the dizziness, I'm terrified of a heart attack.

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