Oh my gosh, just found out that Amlodipine is causing my living hell

Treatment and medication
1

Hi All - Bear with me as I download here. In April 2012, I was put on Amlodipine 5mg for high B/P.  During this time I was the sole caregiver for two ailing parents, trying to get kids off to college & going thru Menopause. Towards the end of 2013, I developed tingling in my face, sometimes my left arm and felt very vascular in my head at times.  I told my GP & she always told me it was my stress level & I was experiencing anxiety dealing with the care of my parents.  My B/P spiked again and Irbesartan was added to the cocktail.  I continued having headaches, flushing, tingling, electric shock in hands & calves and blurry vision.  When I googled my symptoms the same thing would come up....menopause symptoms, rosacea & "histamine intolerance".  I finally did get diagnosed with Roacea and so I just figured it was the Rosasea triggering my hormonal imbalances & vice versa.  Every time I brought this up to my GP, she laughed & said I had no more hormones left etc.  So, fast forward to March 2017 when I once again went to my GP & complained about my symptoms, she told me to go home and take an Ativan & then this past June after my physical & me continuing to complain she sent me home with a increased dosage 10 mg of Amlodipine.  From June 16th - July 6th I had horrific headaches, blurry vision, drop dead hot flashes, flushing, heart palpitations, anxiety, no energy, total dread feeling, tingling in face, hands and feet, muscle pains, rash on calves, swollen ankles and feet 

weird pain in my neck, upper hi issues -  I couldn't stand it - when I went back in for a B/P check my B/P had actually increased instead of decreased 152/84.  When my GP saw my swollen ankles she switched me from the Amlodipine 10mg to Bystolic 5mg. When the Pharmascist went to counsel me on this new drug she told me all the horrible side effects, so when I got home I just decided to look up the side effects of Amlodipine & then found this forum....OMG! I have been living with these symptoms now for almost four years and thinking it was menopause, Rosasea & grief/stress causing these unbearable side effects.  It seriously has diminished my quality of life.  I told my GP I was taking myself off of the Amlodipine as of this past Saturday. I feel less anxious/depressed, swelling has decreased, tingling in extremities less, electric shock less, rash gone but still some residual headaches and still don't feel myself.  My other Dr friend said it may take 2 to 3 weeks to feel better. What have other people found while coming off this horrific drug? I need to have hope that one day I will feel myself again - I now believe this drug caused my Rosasea, because your skin reacts to when your body is not well - Ugh! Western medicine only treats the symptoms not the cause - I am on a mission to recover my health. Please share in your recovery from this drug - 

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Yes, it is nice to have your feet/ankles come back to a normal size, so you can get footware on without a titanic struggle.

When I came off amlodipine, I was put on felodipine, which was okay for a little while, but then came back all the symptoms of amlodipine. Personally I think most of these calcium channel blokcers cause issues for people, that beta blockers don't.

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Hi Debra, i did not see it for over 12 years. So thankful for this site. It took about a week for most of the side effects to subside after stopping the Amlodipine. I feel much better.  

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I'm thankful for this site too. I don't have very high BP and am lucky enough to have a GP who doesn't get hysterical and reach for the prescription pad if I occasionally go over 140/90. However, it is creeping up - which is normal at 73 I guess - so I know I'll probably end up on meds. That's why I lurk on these BP boards. After a couple of years of hanging out on this particular forum, at least I now know which one not to take!

I'm curious to know if anyone still takes verapamil, which I believe was one of the earliest calcium-channel blockers. My mum was put on it 25 years ago for alarmingly high BP when she was in her mid-70s. She stayed on it till she died aged 89. It worked very well and she never had a day's trouble with it - except when some idiotic new doctor doubled the dose because her BP was 135/80. Her feet and ankles ballooned after only a couple of days, but went back to normal when the GP dropped the dose back again after I gave him a piece of my mind.

Since I tend to be like my mother from the point of view of general metabolism, I'd be happy to try verapamil if it's still around.

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My advice is to try for beta blockers. I know you have the knowledge to know the difference and that they work in different ways to achieve the same thing. But beta blockers are so much kinder on the body.

PS I saw your home town in the news last month.

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Thanks for the advice. I'll remember that if and when I need it.

PS: Yep - that's us. Always in the news for all the wrong reasons!

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Thank you for that information, but I am seriously going to try alternatives here & try and lose weight & exercise.  Living this way for the last 4 years is no way to live.  Thank you for the advice

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Thank you Mesirm - I am on day 7 Amlodipine free & still feeling weird...spacey, some tingling and horrific headache last night.  I was on the drug for 5 years, so I suppose with all toxic drugs, your body needs to adjust - I am continuing with my acupuncturist to try & detox - 

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My circumstances were similar to yours, in that I was on them for approx. 5 years. Felt fine for the first year or so, so when the symptoms started gradually, I didn't connect them with the Amlodipine. I had all your symptoms and more, and complete misery. Like you, none of the doctors mentioned the meds, just kept telling me it was all due to 'other things'. I suffered for 4 years getting worse all the time, then happened to go on holiday and forgot to take them with me as my brain felt like mush but I was too miserable to care. At the end of a fortnight, I felt totally different, couldn't believe the change. Never took them since. I'd say that it took a month/6 weeks maybe, for all the side effects to disappear completely. I understand that these tablets work for some, and that's fine, but I do think that doctors should be aware of how badly they affect a lot of people and listen to their concerns, not just dismiss them saying it can't be the tablets and it's obviously 'other things' that's causing that misery. Once recovered, I felt really angry, like I'd wasted 4 years of my life on those things. Doesn't do much for your faith in the medical profession. But you do recover so hang in there.

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Oh thank you so much for that reassuring message.  I am going into my second week without "the poison" and as much as I have less symptoms, I am no where near my old self.  I am still trying to figure out if the fairly constant flushing is still the Amlodipine in my system or it's my Rosasea on overdrive.  Emotional stress is my #1 trigger for an outbreak & feeling as horrible as I have has made me super stressed.  Did you have residual flushing after you stopped it? I just want to wake up and be me again - I too am getting really angry that I lost this many years of my life, couldn't even dance at my sons wedding my feet were so swollen.  I think I am most upset with myself, because even though I didn't have side effects for awhile, I never questioned the Amlodipine.  I certainly think that all the times I complained to my GP, she surely should have questioned my RX.  We have to be our own advocates - valuable lesson learned! Thank you!

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Hi Debra

I did have hot flushes, where my face used to burn and go very red, but I can't say it was rosacea, and that calmed considerably once I came off the tablets. I can say that during the time I was on them, I had a routine blood test and was found to be bordering on anemia, which would probably go toward helping explain the debilitating fatigue I suffered. When I asked what would cause that, I was told it was usually down to diet. I doubted this as I'm so careful about my diet. I'd put on 4 stone whilst on this med and no matter what, couldn't lose it. I was put on iron tablets for two months. I found out much later when researching amlodipine, that it should not be prescribed long term as can cause low red cell count if you do. Not one doctor (and I saw many) told me this. As a sideline, it can also cause a severe depletion of magnesium, which can also be dangerous. Of course, I didn't find all this out until after I stopped taking it. When seeing the difference, decided to start researching and obviously found this site and many others with information about the drug, you only have to google, why it didn't occur to me beforehand, I can't say. Think it was because I've never really needed a doctor before all this and trusted they knew what they were talking about, I don't any more.... plus the fact the mental problems I had, depression, anxiety......I just didn't have the wherewithall to do anything as I couldn't think straight.

After reading up on it, I bought some Vit B12 tablets and some magnesium. I also bought the spray on magnesium oil and soaked my feet in the crystals regularly.

During the time on the amlodipine, I too ended up with swollen legs and feet to the point I had to buy flip flop type shoes two sizes larger and use a walking stick. I developed severe excema on my feet where the skin split open and bled, which then caused an infection in my leg and I was put on antibiotics for a month. The mental side effects were horrendous, I didn't drive for 3 years, severe backache...I couldn't stand for more than a few minutes let alone walk very far, joint and muscular pain all over, the list is endless, it would take too long to go through all of them. Needless to say, all these 'problems' have gone and I lost 3 stone in weight without changing my diet.  I was so angry in the first couple of months when I started to recover, that I vowed never to go back to a GP. I took my BP at home, and I knew it was higher than it should be, as it runs in my family, but I felt so well I couldn't face a doctor bullying me into going back on tablets. However, I am at that stage now. Almost 2 years after stopping amlodipine (which, by the way, no one at the surgery questioned) I got called in for a routine blood test and to have my BP taken. Knowing what would happen, it rocketed when the nurse took it and yes, the first thing they said, was that I had to go back on medication for my blood pressure. So now I'm in the process of arguing with my GP's on which medication I'm prepared to take. But I will NOT suffer any where near any of the symptoms I had before. I'll take my chances before doing that as my quality of life was nil and I've never been so ill in my life, the doctors however told me many times whilst going through all this, that my BP was OK,............. so that was alright then. They still don't want to know how bad it was for me and when I start to explain, cut me off and told me that fat ankles were a small price to pay considering the alternative. I'm 60 years old, like I give toss about having fat ankles if that were all it took, but we all know that isn't the case.

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D, are you monitoring your BP at home? If so, is it at the same level as it was when the nurse took it? If it's consistently lower, then perhaps you could keep a daily chart and show this to the doctor at your next visit. Another alternative might be to insist on going on 24-hour monitoring before you agree to any other meds. This too might establish how big a part "white coat syndrome" is playing.

I don't see why you should allow yourself to be bullied into taking anything you don't want to. It's your body.

25 years ago, when my BP went up to 150/90, my then-GP automatically gave me a prescription for BP medication. Can't remember which one, I never even looked at the scrip. I thanked her nicely, then tore it up when I got outside. In the next six months or so I lost a couple of kilos, stepped up my exercise levels and started taking MgO. Next time I went, my BP was down to 120/80, and it stayed there. She continued to give me prescriptions for the next couple of years (which I continued to accept and tear up) but neither of us ever actually mentioned medication again. About three years down the line she appeared to have forgotten she'd ever prescribed anything and stopped issuing prescriptions!

Clearly, if your BP is more than borderline-high you'd be well advised to go on some kind of medication. However, it depends on how much risk you're prepared to take, and you have to be the arbiter of that, not your doctor.

After a house move four years ago, I now have a different GP, who's very open to discussing everything. My BP is usually around the 145/90 mark when he takes it (though lower when I take it at home) but it occasionally spikes as high as 160/95. When this happens, he chats to me for a few minutes - last time we discussed Downton Abbey, from which he claims to be learning English! Then he takes it again, and it's always back to 140/90 or lower.

We've discussed the future, on the assumption that my BP will probably continue to rise gradually, and there may well come a time when medication might be advisable. He understands my general reticence about taking medication and always presents his arguments in terms of the risks I'm prepared to take. I find this reassuring. I know that if - or probably when - it does come to needing medication, I'll be put on the lowest possible dose and will be given every opportunity to discuss any side-effects.

I think the best approach to the doctor-patient relationship is to view it as supplier-customer rather than parent-child or master-servant. I agree that not all doctors seem to see it that way, but maybe it's up to us patients to start educating them!

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Oh boy, talk about having similar experiences... after one blood test they thought there was something going on with my iron...yes, I have been taking magnesium/calcium & vitamin D because ever since I have been on Amlodipine my Vitamin D levels have been very low - when I was researching all my symptoms, I kept coming across "low magnesium" as a cause for most of my symptoms, so I just put myself on it, hoping it would relieve my symptoms - never thinking that Amlodipine was causing low magnesium levels. What makes me so mad is, all the while I thought I was having all this tingling & flushing from my Rosasea and eating antibiotics for the Rosasea, when in fact, it was the Amlodipine causing the flushing - I don't even think I would have Rosasea, if it wasn't for this stupid drug I was put on - all the bloody wasted time feeling horrible - makes me so mad!! Thank you for your very insightful response - cheers to health!

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Hi there - I absolutely appreciate all that you just shared - I agree wholeheartedly with you now - 5 years ago when I was put on BP RX, it was the most stressful time of my life, menopause, caregiving for ailing parents, kids leaving for college - I didn't even questioned my GP, I just took the RX's - let's just say I wasn't taking very good care of myself either... stress eating, no stress outlets etc. I know I suffer from "white coat syndrome" even taking my parents to the Dr stressed me out - I always remember my parents GP saying that as you age your BP does increase & it is healthy to know your "range" - also, as we age it is far better to have higher BP than low BP because of the risk of falling - I have learned a valuable lesson here - we must question everything & be our best advocates & believe in our bodies & the power of healing - we need to treat the causes of disease not the symptoms - here is to self care & healing - thank you!

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Hi lily65668

Thank you for your reply. Yes, I am taking my BP at home and have done for several years. When I first got put on amlodipine, it was in the 130's over high 70's, which I was told was way too high. Now I don't believe it was as I was around 53 at the time and post menopausal, but then, I knew next to nothing about BP. I'd had a routine BP check at work and the young girl frightened me to death by saying I should see my doctor straight away.

Anyway, to cut a long story short, it was the start of a nightmare for me and my first real interaction with the medical profession. I know I'm probably the wrong person to ask, but I'm not impressed. When I started with the side effects, not one doctor referred to the med's and after being on them for approx 12 mths, it never occurred to me to ask.

Gradually, different things started happening. My ankles and lower legs swelled up and became very heavy. Fatigue, aches, pains.......ah well, I thought, must be part and parcel of growing older. Eventually, over the course of the next 2 years things went from bad to worse. I started to gain weight and couldn't stop it going up no matter what I did. I started with terrible stomach problems, bloating, indigestion, severe acid reflux, I was sent for an endoscopy, they couldn't find anything so I was put on omeprazole.  I started to suffer terrible shortness of breath, and was sent for a chest Xray. Couldn't find anything wrong. My back, joints and muscles got so bad I could hardly move and was given pain killers and sent to see a rheumatologist. I began having memory problems (always had excellent memory) , brain fog, couldn't concentrate, anxiety set in, depression. The list goes on. I felt completely mentally detached from everything. I honestly thought I had Alzheimer's. Oh my Lord, when I start remembering how bad it got! My BP went up and lisinipril was added to the mix, but no help or relief for my symptoms and my GP's started to treat me like a hypochondriac. I stopped going to see them in the end and just kept taking the tablets as they had said I shouldn't stop them, because if my BP wasn't controlled it would make things worse. I believed them. For four years it was just a constant roundabout of doctors and hospitals and pills. By year 4, I was like a zombie.....

As said previously, if I hadn't been forced to go on holiday by my husband (what that poor man has had to put up with) and forgotten to take them with me, I believe I would still be in the same state now. It still makes me angry when I think about it and has given me a kind of phobia about doctors and BP monitors. As soon as I know I'm going to have a reading at the surgery I can feel the panic and anxiety start several days before and it goes way up before I even get there. I've monitored my BP for the past couple of years and it's been around 150/80 area, many times it's been lower, sometimes higher depending on when I take it. I told my present GP this, but as it goes through the roof whenever I have it taken there, she's pushing me to go back on med's. I refused at first, trying to explain what had happened, she didn't look like like she believed me, and asked me to do a 24 hour monitor. I said I would, knowing that it wasn't going to be a true reading because just the thought of that thing on my arm set my heart racing. The day I had it fitted, it was ridiculously hot weather, I had a busy day and I was aware of it every second. I didn't sleep hardly at all, I was waiting for the damn thing to go off all the time and worried all the time it was going to take really high readings, then the fight about meds would start all over again. I know it's sounds stupid and I probably brought it on myself, but I never used to be like this. I've never struggled with anxiety before in my life, but a BP monitor and a doctor will now do it for me.

Of course, when she got the readings, they were too high and I'm now in the process of trying different BP med's and so far I've tried 3, each which, within 2 weeks, started some of the old symptoms off again and I stopped them. At present, I'm on a diurectic, had to have 2 blood tests in the past month, as they can damage your kidneys apparently, and now been called back to make an appointment with the doctor as my potassium level has been affected and is too low. It's really stressing me out and my BP readings are going up higher than they were before I started taking the damn things so they're obviously not working, which is a shame because I haven't felt much different on them so far after 6 weeks of taking them. Actually, my back is aching a lot lately and noticed a weakness in my left knee has started..........but I was hoping they would bring it down enough to keep the doc quiet and not cause me any problems. Mind you, I took amlodipine for approx 12 months before the bad things started, so I don't suppose it matters if you feel ok after 6 weeks as you just can't tell when side effects are going to set in. At least now I know what to look out for. If I can't find one that works for me, then I can see me doing similar to what you did, I'll just collect the pills and not take them. I know the risks, I'll make my own mind up. Phew, sorry this has gone on so long........thanks for reading if you stayed with me this far!

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debra16694 - so sorry, I feel like I've hijacked your thread! I know you have replied to my earlier comment, but I can't read it yet as it's saying it's waiting to be moderated? xx

 

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Debra, I just sent you a private message explaining how not to get your posts held up - or eventually deleted. Quite safe to read it. PMs via this site don't carry viruses or reveal the email address of either party.

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That story is horrific. You were put on medication for a BP of 130s/high 70s. But that's perfectly normal for a 50-something! You were then put through an endoscopy and prescribed omeprazole (which is not without its own side-effects) in an attempt to treat what was obviously one of the side-effects of the BP medication. And so it goes on, I'm afraid - each medication producing side-effects requiring another medication to treat the effects of the previous one, and so on ad infinitum. That's how modern medicine tends to work.

I have to say, though, that I have some sympathy with doctors. The problem tends to start with the patients, too many of whom don't feel happy unless they come out of their doctor's surgery with a prescription or a referral for some kind of intrusive investigation. This in turn prompts some doctors - especially the lazier ones, dare I say it - to simply assume that everyone who goes to see them requires the same approach. They don't explain to the patient that the medication or investigation is merely a precaution, in response to the patient's visit, but leave the patient with the impression that it's vital they take the medication, undergo the procedure etc., at the risk of damaging their health if they don't comply. In fact a large minority of us are only too happy to be reassured that our symptoms aren't serious and can perhaps be treated with lifestyle measures rather than medication. However, this takes more of the doctor's time than just writing out a scrip.

I'm wondering whether you took your BP at the end of the holiday period, when you hadn't been on amlodipine. I'd be interested to know what it was then. The systolic (upper) value is much less important than the diastolic (unless it's really high on a regular basis) and is more likely to be influenced by anxiety. A diastolic of 80 is very good at any age, and 90 isn't too terrible once you get to your late 50s. My GP even accepts occasional diastolic spikes to 95 when taking my BP in his surgery.

I'd strongly advise you to look up the possible side-effects of any medication you decide to take in the future. There are plenty of reputable medical sites that describe the effects of different medications in easily understandable layman's terms. Try looking up the generic name of the medication (which usually appears in smaller print than the brand name on the pack) as well as the brand name. Alternatively, you could always put on two pairs of reading glasses and use a powerful magnifying glass while sitting under floodlights so you can read the patient information leaflet that comes in the packet! I swear they use tiny print like that to discourage the patient from reading it. Did you know, by the way, that when I was a nurse (in the 60s and 70s) pharmacists were obliged to remove the leaflet before dispensing drugs to avoid worrying people? Thank goodness for the internet!

I hope you'll soon find the right balance of medications and lifestyle measures that will work for you.

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OMG! You and I have the exact story - I have become so anxious about this whole blood pressure thing, that just thinking about a reading puts me into a tailspin - in fact I am going to go to Urgent Care this morning because I woke up two days ago with this horrific pain in my calf and now the pain has gone to my knee area and it is extremely painful. I am concerned that it might be a blood clot since I took myself off The Amlodipine 2 weeks ago. Going in to have my blood pressure read is freaking me out more than going to Urgent Care - This anxiety thing is bad & I never suffered with it before I took the Amlodipine - Just curious what your pains felt like? Were they intense? Hoping this is just a muscle pain that everyone has experienced with this bad drug and not something more serious- ok, will try and figure out the messaging thing - thank you!

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Hi Lily. Sorry for delay in replying, had a busy few days. I've just got back from the doctor's to update on how the diuretic is going. I told her that I've started getting bad headaches, I'm being woken up about 5am unable to move my head with a banging headache which will not ease even with paracetamol. Guess what, it's not down to the tablets, she's not heard of that before, and I need to do neck exercises as it's a muscular problem. I researched these tablets as soon as I was given them and before I took any........the top side effect listed.....headaches. I'm also suffering backache and muscle/joint pain. It says on all the sites I researched, that if you get any of these symptoms, to inform your doctor. I just did and she dismissed them all. None of them are to do with the tablets. Funny I thought, I'd already been on here reading other people's experiences on this med, and many say they suffered the same things I'm starting with, all told it wasn't the med's, yet they all stopped having the problems when they stopped taking the tablets. Do the doctors just not know this, or is it that they don't want to? Either way, I'm sorry to say, I don't have a lot of faith in them.

She took my BP....... but she did say beforehand, that her machine had been playing up and not working properly. Really????? When you're handing out pills to people for ridiculously high BP readings, I would like to know that you have an accurate machine that's working properly thankyou very much. She took it 3 times, twice it recorded zero, which she said was a fault on the machine, then finally it recorded a reading of 195/102. I take my BP at home all the time and never got a reading that high. She said, Mmmm.....it's the same as it was before you went on the tablets. I said, no, it's not. I don't get those readings when I take them and showed her my own readings that I've been taking. She didn't seem to take much notice and now she's mentioned adding something else to the mix and booked me in for another blood test. I'm getting so fed up of all this. Can see me just going through the motions with her, but if I get worsening side effects, I'll just stop taking them altogether and I'm not adding anything else........it's not worth it. Doctors just don't seem to listen at all to what you're telling them or don't want to hear it. Too much trouble I think.

But thank you for your response, it made me laugh! You're so right about the leaflets.........I do read them but don't trust them, I'd much rather come online, research and hear from others who are actually taking them. I go on holiday in a few weeks and I'm definately not going to have it spoilt by feeling ill while I'm away.

I hope you continue to feel well and stay off this merry go round of pills! Best wishes. xx