Difficulty finding a blood pressure med I can tolerate

Posted by lsquared1004 @lsquared1004, Dec 8, 2024

Hello all. I'm dealing with mild dilation of aortic root (3.7
cm) and ascending aorta (4.2 cm). For several months been bouncing from one blood pressure to another. I'm very sensitive to medications and all I have tried make me feel awful.

We started with 25 mg of Metoprolol. My hands and ankles became swollen, I was tired and despondent. Then I was put on 25 mg of Losartan. That gave me awful headaches, lower body pain (hips, knees, feet, back) and I felt like I was walking in quicksand. Switched to 40 mg of Valsartan and the lower body pain was excruciating. Next was 25 mg of Spironolactone. My potassium went crazy and had horrible pain.

I'm now staring at a bottle of Lisinopril 5 mg and I'm terrified to try it. The potential side effects sound horrible.

Anyone else had challenges finding a good BP med? I don't have high blood pressure but, as you all know, they still want you on something. I'm really at a loss for what to do.

Any of you on Lisinopril with no side effects?

Thanks!

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

At the age of 76 I'm currently struggling with these meds and so far have had 3 for 3 "rare" side effects. Lisinopril made my hair fall out by the handfuls (it returned somewhat but is now quite thin), Losartan made me have horrible choking fits with a tickle and cough that never stopped (until I stopped the drug) and the latest, Norvasc has given me dysosmia which is a very strong unpleasant smell that isn't really there. It's awful and feels like my head is stuck in a sewer but the smell isn't anything I've ever smelled before. The health providers keep dismissing me and initially don't believe my symptoms are caused by the drugs until I show them articles I've found and had a pharmacist back me up. With the choking in particular they sent me to ENT (who decided it was probably reflus, the latest catch-all) and then wanted me to do a barium swallow. I declined and found evidence on my own and 2 days after stopping the Losartan the symptoms stopped. I'm so frustrated. I'm tempted to stop trying and take my chances with diet and exercise though it's not likely to keep my bp low enough. I'm scared of new drugs and their side-effects and tired of dealing with the medical providers. Any ideas?

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Profile picture for ae49 @ae49

At the age of 76 I'm currently struggling with these meds and so far have had 3 for 3 "rare" side effects. Lisinopril made my hair fall out by the handfuls (it returned somewhat but is now quite thin), Losartan made me have horrible choking fits with a tickle and cough that never stopped (until I stopped the drug) and the latest, Norvasc has given me dysosmia which is a very strong unpleasant smell that isn't really there. It's awful and feels like my head is stuck in a sewer but the smell isn't anything I've ever smelled before. The health providers keep dismissing me and initially don't believe my symptoms are caused by the drugs until I show them articles I've found and had a pharmacist back me up. With the choking in particular they sent me to ENT (who decided it was probably reflus, the latest catch-all) and then wanted me to do a barium swallow. I declined and found evidence on my own and 2 days after stopping the Losartan the symptoms stopped. I'm so frustrated. I'm tempted to stop trying and take my chances with diet and exercise though it's not likely to keep my bp low enough. I'm scared of new drugs and their side-effects and tired of dealing with the medical providers. Any ideas?

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I survived a complete type A1 aortic dissection in 2015. I had major problems with some of the common blood pressure meds too. Lisinopril gave me a relentless cough that wouldn’t go away until I finally stopped taking it. I tried a few others that caused strange side effects that doctors didn’t initially believe were related to the meds—until I did my own research and connected the dots. Sound familiar?

Eventually I landed on a combo that works: carvedilol and amlodipine, along with atorvastatin. I’ve done just fine on that mix. But it took time, trial and error, and being persistent. What helped most was starting with low doses, trying one med at a time, and giving my body time to adjust before switching again.

If your doctors are being dismissive, it may be time for a second opinion—ideally from a cardiologist who has experience with aortic disease or post-dissection care. You deserve to be heard and taken seriously. Adverse reactions—no matter how rare—still happen, and they can be real and disruptive.

There is a combo out there that can help you feel safe and stable. Don’t give up.

Peace and good luck.

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Profile picture for moonboy @moonboy

I survived a complete type A1 aortic dissection in 2015. I had major problems with some of the common blood pressure meds too. Lisinopril gave me a relentless cough that wouldn’t go away until I finally stopped taking it. I tried a few others that caused strange side effects that doctors didn’t initially believe were related to the meds—until I did my own research and connected the dots. Sound familiar?

Eventually I landed on a combo that works: carvedilol and amlodipine, along with atorvastatin. I’ve done just fine on that mix. But it took time, trial and error, and being persistent. What helped most was starting with low doses, trying one med at a time, and giving my body time to adjust before switching again.

If your doctors are being dismissive, it may be time for a second opinion—ideally from a cardiologist who has experience with aortic disease or post-dissection care. You deserve to be heard and taken seriously. Adverse reactions—no matter how rare—still happen, and they can be real and disruptive.

There is a combo out there that can help you feel safe and stable. Don’t give up.

Peace and good luck.

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Thanks so much for your reply. I think I may have posted on the wrong discussion thread as I haven't had an aortic aneurysm, just high blood pressure. I just saw that people were having so much trouble with BP meds. I'm glad you finally found your meds that work for you. Anyway, your comments were very helpful and supportive, especially about needing to research on one's own and deserving to be heard. On the generous side I guess they often are too busy to think outside the box. I guess I'll give it another try but again, it's scary as in "what's next" in the world of weird side effects. Sometimes I think what might kill me is the medical care.

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"Then I was put on 25 mg of Losartan. That gave me awful headaches, lower body pain (hips, knees, feet, back) and I felt like I was walking in quicksand." 😮

You may have answered something for me, so thank you. My pain has felt worse since Losartan.

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Just throwing this out there. I've been on Lisinopril 10mg since 1996 now 20 mg due to unstable and elevated BP. Ive also been on metoprolol since 2008. Have never had any issues with either. Two weeks out from bilateral kidney stents placed now my BP has stabilized and even gotten lower... giving to ask my PCP about going back to 10mg. Mind you I also have two illeac stents 17 and 19 and have a stable AAA since 2020 at 4.2. Thoughts about these two drugs? Following...

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Likely meds of the same class will be give you the same side effects lorastan is an. ARB Ask your doctor about beta blockers metroprolol is just one . I’ve been taking for a long time No side effects But side effects are very individualized good luck

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Profile picture for thevikole @thevikole

Just throwing this out there. I've been on Lisinopril 10mg since 1996 now 20 mg due to unstable and elevated BP. Ive also been on metoprolol since 2008. Have never had any issues with either. Two weeks out from bilateral kidney stents placed now my BP has stabilized and even gotten lower... giving to ask my PCP about going back to 10mg. Mind you I also have two illeac stents 17 and 19 and have a stable AAA since 2020 at 4.2. Thoughts about these two drugs? Following...

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I was on metoprolol after discharge, but around 4 months later I attended heart failure clinic and they switched to Bisoprolol. But I am on four other meds too.
My BP is very good, but only side effects are sometimes I can't walk in a straight line or I feel like I will fall. Almost never do though.
BP is amazing though.
Often a little short of breath or a bit puffy.
It took a year to titrate to the current med line up.

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Profile picture for Lara K @larak

Is your blood pressure consistently elevated, or intermittent? Have they looked at your metanephrine levels? Usually, it's a 24 hour urine lab that checks for breakdown products of human stress response hormones, catecholamines.

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Hi…. What might this show? Does it help to explain the intolerance to medications?

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Profile picture for ae49 @ae49

At the age of 76 I'm currently struggling with these meds and so far have had 3 for 3 "rare" side effects. Lisinopril made my hair fall out by the handfuls (it returned somewhat but is now quite thin), Losartan made me have horrible choking fits with a tickle and cough that never stopped (until I stopped the drug) and the latest, Norvasc has given me dysosmia which is a very strong unpleasant smell that isn't really there. It's awful and feels like my head is stuck in a sewer but the smell isn't anything I've ever smelled before. The health providers keep dismissing me and initially don't believe my symptoms are caused by the drugs until I show them articles I've found and had a pharmacist back me up. With the choking in particular they sent me to ENT (who decided it was probably reflus, the latest catch-all) and then wanted me to do a barium swallow. I declined and found evidence on my own and 2 days after stopping the Losartan the symptoms stopped. I'm so frustrated. I'm tempted to stop trying and take my chances with diet and exercise though it's not likely to keep my bp low enough. I'm scared of new drugs and their side-effects and tired of dealing with the medical providers. Any ideas?

Jump to this post

Oh my gosh…. So nice to hear I am not alone with my struggle of tolerating BP medication (and Cholesterol medications) did you find something that works. My side effects are all similar to yours . I was able to tolerate Lisinopril for a couple of years with taking the supplement CoQ10 but then I took repatha (cholesterol) which I think really messed me up.
Did you find a solution?
At this point my doctor says I will need to try an alpha blocker and if that does not work she will send me to a hypertension clinic to investigate renal ablation
I don’t have any aneurisms at this point
I have medication PTSD and it’s sounds funny but I mean it sincerely

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So sorry to hear you've been having problems with medications. Your PTSD is real and I know my own trust level is zero. I've had to argue with the MD's about my symptoms truly being side effects from the drugs and have even cut and pasted the drugs' side effects from valid sources and sent it to them to prove it. After hair loss with Lisinopril, severe choking with Losartan, my most recent and possibly worst "rare" side effect from Norvasc is parosmia. I have a constant horrible phantom smell that permeates everything. I can't smell anything nice or normal because of it. They sent me to an ENT MD who said they don't have a solution for it and don't know if it will ever go away. It's awful. I had stopped the medication after about 2 weeks because of it and now take nothing. I'm very lucky though as my blood pressure continues to be normal. I think they initially started me on medication when I was having severe back pain which I believe caused the bp elevation so I should never have been put on them. Anyway, it would take a lot for me to take any further prescribed medication for anything because my body seems to really hate these meds. I really hope you find a solution for your situation and I think sometimes it's a good idea to get another MD opinion. My best advice is to really listen to your body. Best of luck.

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