Editorial Note: The first RxISK story was about Plavix – Fiona’s Story. This anonymous account has striking overlaps with that. Plavix is clopidogrel. The grel group of drugs include 1tazigrel, dimetagrel and others. They function like expensive aspirins. They cause problems on withdrawal and can be lethal. But medics and nurses will bat the problems away and suggest that any difficulties either on the drug or on withdrawal are in your mind.
Don’t you know there ain’t
No devil, there’s just god when he’s drunk, well this stuff will probably kill
You, let’s do another line,
what you say you meet me down on Heartattack and Vine.
On August 6, 2016 I had a heart attack. I am a healthy, active 34-year-old woman. I have no indicators for heart disease – low cholesterol, the right weight, no prior health history. My heart attack was caused by a condition called Spontaneous Coronary Artery Dissection (S.C.A.D.). This is not a typical heart attack – it is the result of a tear in one more of the coronary arteries. SCAD is found most commonly in women ages 30-50 who are fit, have no indicators for heart disease, many of whom are recently postpartum.
I went to a regional hospital in my area where cardiac catheterization was done and the diagnosis made. The cardiologist explained that with medications my artery would heal on its own. And admitted that I was only the second SCAD patient he had ever diagnosed. He sent me home on Plavix, Lipitor, Metoprolol, baby aspirin, and short acting nitroglycerin tablets. He instructed me that I needed to take each of these daily for a year, and then continue to take the aspirin for life. He gave me no physical restrictions and said that I could return to work immediately.
I refused to take the Lipitor since the lab results from the hospital showed that my Cholesterol was, in fact, low and the doctor could not adequately explain why I should take it. He just said it was a “standard of care” for heart attack patients.
As soon as I was discharged I began to search for a specialist with experience treating SCAD. This was not an easy task as the condition is rare. Within 24 hours I was back in the ER with more chest pain, and was very happy that I now knew there was a hospital within an hour’s drive that had a SCAD research program – one of only a handful globally. I asked to be transferred.
When I saw the SCAD specialist her first questions were related to stress: Was I a type A personality? Did I work outside of the home? How many children did I have and what were their ages? I have three kids under 5 and the youngest was 9 months at the time. I had also just recently gotten a promotion at work and was managing a team working on-call 24/7. She explained that most likely the two major factors in my SCAD attack were stress and recent childbirth and breast-feeding with the associated hormonal changes.
She explained that there was not a ton of research about SCAD yet. Most treatments are based upon empirical evidence with normal cardiac patients with coronary artery disease, many of whom are male and most are older than 50. She supported my decision to refuse the Lipitor. She also told me that if I had not already begun Plavix the week before and become stable on it, she would not have recommended it. She prescribed Imdur, a long acting nitroglycerin to reduce the chest pain – angina, and Xanax. She explained that reducing stress and anxiety was very important, and that as I could expect bouts of chest pain, I should try taking a Xanax first before heading back to the ER.
At this point I was taking 25 mg of Metoprolol ER, 75mg of Plavix, 15 mg of Imdur, and a baby aspirin daily. I hesitated to fill the Xanax prescription. It was overwhelming and scary to be taking so many meds. I had never taken more than antihistamine before this. I filled the Xanax with the intention of taking it only if absolutely necessary.
As the next few weeks passed I found that I was having anxiety and depression issues unlike any I had ever experienced previously. This was not completely unexpected. I had almost died. It was horrible. I couldn’t stand to be around my family and children – there was too much noise and confusion. I felt the constant need to isolate myself. The only thing that seemed to help was quiet and meditation.
I also noticed that almost every afternoon, I was experiencing increasing muscle soreness and pain in my chest, back, neck, and shoulders. It would usually get better as the evening progressed. The only thing that helped relieve the soreness and anxiety was Xanax. So on days when the pain was very bad, in desperation, I took it.
I talked to the cardiologist about both my anxiety, depression, and the chest pain. I was questioning whether I should be thinking about taking a longer term antidepressant. I was still thinking this was a sort of PTSD from my heart attack. She and I talked at length trying to determine whether the chest pain might be cardiac but since it was not episodic- it would come and stay for hours – we both felt that it was unlikely related to my heart.
Slowly, after about a month on the medications, I started to feel some relief of the anxiety and depression symptoms. The chest pain still returned daily to varying degrees, but I was starting to feel better emotionally. My doctor and I agreed that it was time to do a stress test and see how my heart was doing before I moved on to cardiac rehab and was allowed to begin exercising again.
I passed with flying colors. The imaging showed no remaining blockage in my heart- it had healed fully and was again functioning normally. My test results put me in the 93rd percentile for physical performance of ALL women ages 30-39 (not just cardiac patients).
I was so relieved! But if my heart had healed and was fully functional again, why was I still dealing with chest, back, neck, and shoulder pain on a daily basis? Every afternoon it came on like a wave. It would crest and recede. And I had yet to find anything other than Xanax to help relieve it.
I decided that it had to be the medications. I didn’t know which one but I knew that the doctor told me that the Plavix had not been necessary, so I asked if I could stop it. She said yes, and told me that it did not require tapering. The next day I stopped it cold turkey after two months.
The first week off Plavix I had terrible panic attacks. I could not stand or sit still. They would last for about an hour. Since I now wear a Fitbit with heart rate monitoring, I knew that my HR was rising, and most likely my blood pressure. I would freak out, certain that I was having another heart attack. Before calling 911, though, I would stop and assess my physical symptoms. I remember thinking what actual pain am I feeling? And I was able to take stock and realize that I was not feeling any physical pain, but rather was in a complete state of panic.
These panic symptoms were worst between 3-7 days after stopping Plavix, they occurred at the same time daily which was unsurprising since I had always taken the medication at the same time every day. After about 10 days I was no longer experiencing widespread muscle soreness, and the panic attacks were gone. Unfortunately, I was now having localized pain in my left chest and shoulder- radiating from my chest toward the collar bone into my armpit and under my shoulder blade. It continued to occur daily in the mid-late afternoon and would get better in the evening.
My nurses at cardiac rehab assured me that the panic attacks couldn’t have been related to the Plavix and were very concerned about my continued pain. I returned to my doctor, I explained about my continued pain on my left side, and my concern that it was related to medications. She agreed that I could taper off the Metoprolol. If the pain went away then I could stay off, if not I needed to continue taking it for a year.
At 12.5 mg a day I was already at the lowest possible dose of Metoprolol. The doctor instructed me to reduce it, for one week, down to 12.5 mg every other day. Then after a week I could drop it altogether.
The first week after reducing to every other day I did not notice too many side effects. I understood that there would be some amount of withdrawal on the days off, and it was noted at rehab that my heart rate on these days was higher. All of that was to be expected.
It was not until I stopped the Metoprolol altogether that I noticed the most drastic effects. I began to have nightmares and strange dreams. I would awake in a sweat with a terrible feeling of anxiety. I also noted periods of heart palpitations. I was warned to expect these along with elevated heart rate, and to extend the taper if they occurred frequently. During the day I experienced hot flashes and most afternoons I had long periods of anxiety. It caused a feeling like when the pit of your stomach drops, but I was feeling it on my left side in my chest and shoulder. Again I would be forced to self-assess and determine whether I was in actual physical danger or just panicking.
After about a week with no Metoprolol I began to have days where I felt physically sick. The strange thing is that I had entire days where I felt great too – like my old self: good energy, ready to return to normal life. Then it would hit. There were periods of terrible lightheadedness and nausea, where I almost felt like I was high on fumes. I kept asking my kids and husband if they felt it because I thought maybe we had some sort of fumes in the house. My vision was blurry, and I felt like I just need to lie down. This happened twice two days in a row, the feeling lasted for hours. Eating seemed to help, but did not totally get rid of it.
Now I am two weeks out from stopping Metoprolol and I am still having trouble sleeping. Awaking nightly between 3-4 am feeling sweaty and anxious. Last night I could not even get to sleep before the anxiety began. I considered taking Xanax to help me get to sleep, but I do not want to take more pills. I know that Metoprolol affects the entire nervous system, including changes to brain function, the pancreas and insulin production, and smooth muscle tissue.
I am very concerned about what changes have happened in my body, what happens to others like me with long term use, and how long I will have to put up with these withdrawal symptoms. I have never had emotional problems or experienced bouts of panic or anxiety before in my life. It is very unusual for me. I just want to feel like my old self again.
The “System” is almost certain to view M as having a nervous problem and it’s very easy to see how most people in this position could be seduced into agreeing. The problems are almost certainly down to Plavix and Metoprolol. Xanax may be helping but if it is, it is likely to be because of some physiological rather than “mental” effect. We would welcome suggestions about why it might help.
The video linked to the Just a Little Heart Attack image above is well worth watching. Men would never survive.
The image below is not a plug for a law firm. It is to make clear that the problems with the Grels are clear enough for US lawyers to risk losing money on cases, but doctors in Europe won’t have a clue about this and not a single European lawyer is ever likely to take a case. All these details are available in Fiona’s Story also.